We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo <3

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide


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.

Let the hiding begin….

Hello. Hope you all are well. I have officially gone into hiding. So much so, that my 3 besties had to bust into my house on Sunday morning to make sure I was o.k. I felt like I was on that show, “Intervention.” I don’t mean to shut everyone out; but it’s what I do best. Being home has been great and I have been loving spending time with Liam and Quinny. I could easily stay in my house and never leave again because when I do go out, the anxiety is still too much. Woody practically kicked me out of the house last night and made me go to a movie. I picked up Linds (my go to last minute girl… thanks mama) and we went to see “Black Swan.” Good movie, but I should have picked something a little less dark. After I dropped off Linds, I was driving home and the tears started up and I couldn’t get them to stop. I had to pull over because I couldn’t even focus on my drive. I’m not going to tell you what thoughts were consuming me…. but I’m sure you can guess. I still don’t think this is real. I still can’t wrap my head around the fact that my perfect little boy is so ill. It seems like yesterday that he had a head full of hair, and was running around always looking for trouble. I can’t tell you how much I miss that little boy. The little boy that I could never get mad at because one look at those bright blue eyes and that mischievous smile and I was done. I always ended up laughing at whatever naughty thing he did. Well, most of the time:) Now, I get to watch as he is too weak to walk and wants to me to carry him all of the time. Now I get to lay next to him and know that every breath he takes is a blessing and every kiss he gives me is a dream come true. Every tear that falls down my face is for him and I think about what sadness was like before all of this. Before all of this, sadness should have not existed in my world because I absolutely had nothing to be sad about. Everyday is a struggle for our family; nothing is easy anymore. I am doing what I can do to push through the motions, I am doing what I can do to survive. I am still numb to everything around me, except for pain. I feel that every second of the day.

We got a call from Radiology today and we have all of Ronan’s scans set up. February 2nd, Ronan will go under Anesthesia for his Bone scan. February 3rd, he will go under Anesthesia again for his MIBG, Pet scan, CT scan, and MRI. These two days are going to be very telling for us. After these scans, we will know exactly where the cancer is left in Ronan’s body and from here we will find out when we start the stem cell transplant. We already know that it is clear from his bone marrow; but the MIBG scan will be the most telling of them all. A MIBG (iodine meta-iodobenzylguanidine) scan is a test used to find tumors of a specific origin. This scan will light up Ronan’s whole body to show us where the cancer is still active. Of course we will be praying that it has diminished immensely. Ronan has come too far and worked too hard for it not to.

So, this is my update for today. Tricia was officially concerned because I have gone off the radar; so here you go Tricia Boo. I’m here, or I’m here as much as I can possibly be. I haven’t been talking to anyone so I hope none of you are offended. I miss you all but just need some time to get back in a routine at home. I miss my New York Miss Macy dearly. I will think about the time I had with her and Tricia in New York when I need to smile. The time spent with those two and Ronan meant the world to me. It felt so good just to be and laugh, even though we were in a hospital with my baby who has cancer. True friends that can make you smile and laugh during the hardest times in your life, are the truest of the true. I love you both so much.

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

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

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

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

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

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

Hospital Reality sucks

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

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

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

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

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

xoxo

Baby’s incision 🙁

Prepare to be schooled

Hello world!

Last night, Woody and I fell asleep around 2 East Coast Time. Ronan woke up around 1 a.m. and was wanting to eat some popsicles. He then wanted some books read to him so I read him one of my favorites when I was little, “The Pokey Little Puppy,” and a few Mickey Mouse books. He woke up pretty early this morning and is now back asleep. Wooddawg is still sleeping; of course:) Today, I have a new friend coming by whom I’ve never met named Ed. My friend, Niki, got in touch with him though the Neuroblastoma world. He has been in our shoes before and Niki has met and talked to him a few times and has nothing but amazing things to say about him. I am excited to meet him, I feel like I already know him. Niki calls him a “big teddy bear:).”

Woody flys back to Phoenix today so I will be here for the day/night alone. Not a big deal… we are moving out of the POU (Pedatric Observation Unit) today. Tricia was supposed to come in on Saturday, but changed her flight to come out tomorrow so I don’t have to be alone for two nights in a row. Now that’s a best friend for you:) She is one in a billion and I am so excited to see my boo. I’ve missed her so much. My mom gets in on Sunday and I am very excited for that as well. It will be the first time that she has been to NYC. I hope I get to show her around a bit. I know she will love Central Park. I’m most excited for her to see Ronan though and how well he is doing. He is going to be over the moon that she is here. Lots of good things coming up in the next few days.

So, a few of you have asked what the next step is as far as Ronan’s treatment goes. I’ll try to explain it to you as best as possible. We plan to start his last round, Round 6, of chemo on Monday. That will last 4 days. After that, we will get back to AZ as soon as possible before his levels drop. After we return home, we will let him recover from the chemo… with hopefully no unexpected hospital visits for fevers or anything like that. Sometime in February, not sure of the date yet, we will start the hardest part of his treatment…. so I hear. It’s called the Stem Cell Transplant. I’ll try to explain it as best as I can. It is basically very high doses of chemo, which destroy Ronan’s immune system. When the stem cells come from your own blood or bone marrow, it is called an Autologous Transplant, which is what Ronan is having. This type of transplant, patients act as their own donor. That is, a child who is about to undergo cancer treatment will have his or her own stem cells removed (harvested) and frozen for later use. After the child receives chemotherapy and/or radiation, the stem cells are thawed and put back into the child’s body. This procedure may be done once or many times, depending on the need. Sometimes doctors will use extra-high doses of chemotherapy during treatment (to kill as many cancer cells as possible) if they know a patient will be getting a stem cell transplant soon after. It not so nice words, they are basically going to “kill” Ronan and bring him back to life with his own stem cells that they have harvested. Stem cell transplantation (also referred to as bone marrow transplantation or hematopoietic stem cell transplantation) treats serious diseases through a process that destroys the patient’s damaged immune system and replaces it with healthy stem cells. (Blood stem cells — regenerative cells that become red blood cells, white blood cells, platelets or plasma cells — are an integral component of a person’s immune system.) The new stem cells restore the blood-forming cells of the bone marrow, thus creating a new immune system in the patient’s body. Make sense? It’s very complicated, very scary, but it is going to give us the best chance of giving Ronan a whole new cancer free immune system. We are on “study,” which means we will be randomized to see if Ronan gets one Stem Cell transplant or two. There are some studies that indicate that a double transplant may be better at killing the cancer for good; but it is not complete yet so we have signed up to be Guinea Pigs. A computer will flip a coin for us and then we will find out what we get. We are guaranteed one, but he may be getting a second one later on down the road. I’m nervous about the 2nd stem cell transplant…. it is so hard on the kids and I really hate to put Ronan through all that twice. As of now, I am just leaving that coin flipping in the hands of the Gods above. We will cross that bridge when we come to it I guess.

This is going to be very hard on Ronan for obvious reasons. We will have to be at Phoenix Children’s Hospital from anywhere to 20-60 days, depending on how fast his immune system comes back. We will be in isolation, which means Ronan will not be able to leave the sterilized room we are in at all, and only a few people can come and go. Everything has to be super germ free and the less people coming in and out, the better. I know getting through this surgery was a big deal, but I think that the Stem Cell Transplant is going to be even harder. I find comfort in the fact that I know Ronan is going to get through this once again with flying colors. He has proven time and time again, that he is no ordinary boy. He is our Rockstar:)

Whew! Do you all feel like you’re back in school?! I feel like I just taught a class;) Hope you understood everything, I explained it as best as I could. Time to try to get my little monkey up and walking around today. Happy Thursday to you all. I hope you are having the best day ever:)

xoxo

Day 1, Post Op

We have been back at Sloan since yesterday. Dr. Angel (La Quaglia) came by yesterday and was blown away that Ronan was already out of the Picu. Dr. Kusher, whom is one of the Neuroblastoma Doctors here, came by as well. He has been the one from the beginning whom has been talking to Woody since the day of Ronan’s diagnoses. I was thrilled to finally meet him and he could not have been nicer. We talked about Ronan and he too kept saying how pleased he was with how well everything went and how great Ronan looked. I asked him about the NYC marathon because I had heard he runs it every year here. He runs for a charity called Fred’s Team. Here is a bit about it below.

Imagine a World Without Cancer

Fred’s Team was named in honor of running legend and co-founder of the New York City Marathon, Fred Lebow — a man who dared to dream of a world without cancer.

While being treated at Memorial Sloan-Kettering in 1991, Fred never stopped running. As he jogged down the hospital hallways, he was inspired by the hope he saw in the faces of the pediatric patients he passed and became determined to run to raise money for a cure.

Fred ran his last New York City Marathon the following year, enlisting sponsor donations to support research at MSKCC. He also wrote to other marathoners and encouraged them to do the same. “Running the marathon is the best way I know to fight this disease,” he said.

Fred’s Team became official in 1995, and since then thousands of members — experienced athletes and novices alike — have joined the race against cancer. The team has grown and the race calendar has expanded beyond New York City to events worldwide, but the goal remains the same: to fund research that brings us closer to a world without cancer.

I’m coming back here to run the Marathon for Fred’s Team next year. And you all are invited to come along with me. Dr. Kushser was telling me how at mile 16, a ton of his cancer patients are there waiting for him. How amazing is that?? What an inspiration.

Last night went really well. I slept with Ronan and Woody slept on the pull out bed at the hospital with us. Ronan slept really well and of course in the morning when I woke up, I noticed that his NG Tube (Nasogastric tube) which went all the way down into his stomach in order to drain his stomach contents via the tube, was gone, pulled out, and laying by his side. That little pistol, he must have been working on it all night while I was asleep and pulled it completely out. He was so mad about it all yesterday. Woody freaked out, I laughed, and called the nurse. She asked the doctor and he said it was o.k. because they were going to take it out anyway today. Ronan just beat them to the punch:) The other thing he was so mad about yesterday was the fact that he woke up with a diaper on. Forget that he has a 6 inch incision on the side of his stomach, forget that he had a breathing tube shoved down his throat, he could not have been madder about the diaper. He is so independently proud and has been potty trained since such an early age and is always talking about how he is not a baby, because he does not wear a diaper. What a blow to his little ego;) I got them to take him off of him and he was much happier.

Today, we have been working on getting him up and moving to get his lungs working as best as possible. He is saying he can’t do it because everything hurts but then he insists on getting down from the bed alone and when I told him we were walking down the hallway he told me he couldn’t but then he practically sprinted down to the door and back. This kid, I swear, has such a fire in his soul. I have never met a stronger person in my life and he is only 3! Imagine what he is going to be like as a teenager!

One of my dear friends, Olivia, gave me such a beautiful gift today and I am sharing it with all of you. She wrote a poem for us and it brought tears to my eyes. She is such an amazing friend and is has such a pure heart and soul. Love you, Liv.

From the first flitter and flutter
He gave you to me; destined to be your mother
Never thought it would be a tough road to travel
Sometimes I want to crumble and unravel

I would gladly do anything to take your place
I see so much love and healing while looking at your beautiful face
I want to be strong for you; a mother is supposed to be tougher
But it hurts me so deep inside when I have to watch you suffer

You are a true love, so sweet and pure
Anything for you, even this, I will endure
Always by your side; every night and every day
This too shall pass, so they say

So, we will keep going through this hell
Pain and sadness is hard, but we won’t dwell
You have so much to offer; the greatest story to share
We’ll conquer the world; giving a reason to be aware

I will make sure this journey has not been in vain
We will make a difference, help to ease others pain
There is a reason for this that is greater than me and you
We will see this through and start our lives anew

From the first flitter and flutter
He gave you to me; destined to be your mother
The road has been happy, sad, and full of joy
A love to stand the ages; a story of a Mama and her boy

I wish I could post the pictures of Ro on here for you all so you could see how beautiful he looks, even though he’s just been through a major battle. I don’t have my adapter at the hospital, but I will try to get it tonight. Woody is working and as soon as he comes back I am going to sneak out for a run. Wood leaves tomorrow, but Tricia comes here on Thursday or Friday 🙂 CANNOT WAIT TO SEE MY BESTIE!!!! My mom is also coming in Friday or Saturday I think… I can’t wait!!!! Woody is returning back to AZ to handle some work things then he will be back here for my birthday on the 11th. The doctors are saying we should be able to go back home around the 17th of January. So excited for that but will be a little sad to leave here. New York has been such a positive experience and I will miss it dearly. But there will be nothing better then getting back to our home, the twins, my friends, and our dear nurses and Doctors at PCH. HI KRISTEN if you are reading this!! We miss you! Please give Sharon and Eileen the BIGGEST hug from Ronan. We can’t wait to see you all!!!

Also, wanted to say a big thank you to my boys’ teacher at Hopi, who has been keeping a special eye on my two little guys. Thank you so much, Cindy. You have no idea how thankful I am for you and how much you love Liam and Quinn and are taking extra special care of them for me while I am away. You are so much than just a teacher to us!!

Hope you all are having a beautiful day! I will try to check in later!

xoxo

Magic Medicine, Day 3 Round 4

Headphones on: check. Music blaring: check. Baby sleeping: check. Tears out of the way for today: check. Today, was overall a good day. Ronan slept in until 9 which is very unusual, but he had a rough night. From about 2-4 he was up and throwing a tantrum. He kept throwing himself on the cold floor, insisting he was hot, and he was mad that he was “hooked up” to all of his medicine. He would not let me touch him, hold him, and kept screaming for me to leave. Finally, he fell back asleep. Mimi and Papa came around 9:30 so I could run home and sleep/shower. The sleep part never happened, but it felt nice to be home for a while. I also got to see Liam and Quinn for about 5 minutes which was a treat. I miss my boys. I came back to PCH and played the rest of the afternoon/evening with Ronan. Trish came by to bring me a coffee and say hello. Ronan was not happy to have her here at first. By the time she left though, he was yelling to her as she walked out the door, “Love you! Thanks for coming! See ya later, alligator!” It was the cutest thing. The “thanks for coming” part melted my heart. The nurses were all cracking up standing outside the door listening to him say his goodbyes. He doesn’t talk much around here, so they got a big kick out of hearing him yell all of those things to Trish. I was going to take Ronan downstairs to meet Mimi as she was dropping off some things to us. I asked the nurse to make sure it was o.k. and I got a big fat NO. Apparently, if you are hooked up to chemo, you have to stay on your floor and I guess they have gotten pretty strict about enforcing those rules. As soon as I told Ronan he couldn’t go downstairs with me, it was meltdown city. We were in the hallway and he started screaming, hitting, and crying. I had about 5 nurses run out to see what the commotion was. This lasted about 20 minutes and finally he calmed down and fell asleep in my arms. His little meltdowns always make me cry. I hate that he does not have the words to express what he is feeling.

New York is right around the corner. I’m anxious to get it out of the way. I am excited to go… I couldn’t think of a better place to spend a month, even if it is under the circumstances we are dealing with. I have the best friends and family who will be flying out to help me out and to give me a break. I cannot wait to meet Dr. Kusher and La Qualia…just to be in the presence of such amazing Doctors makes me feel so thankful that we are fortunate enough to have Ronan in the best hands.

I am hoping that Ronan stays asleep tonight for the rest of the night. We were told today that we will be able to go home tomorrow around 9:00 p.m. Yay for that. We will start Round 5, November 22. I can’t believe how all of this is flying right by. Please keep a special little girl in your prayers tonight. Her name is Mia. A few weeks ago, Auntie Karen and I were walking Ronan around downstairs, and a man chased us down and asked if this was Ronan. He said he recognized him from my blog that he follows. His little girl, Mia, is here now completing another brain surgery. I spoke with her mom on the phone tonight and it sounds like everything went well. She needs lots of prayers and love send her way too. So many kids do. Our roommate, who I will just call, S, went home today. I missed it and I am so sad that I didn’t get to say goodbye. Mimi was here and told me that the dad was anything but nice. After listening to the way the dad was talking to his son (who he hasn’t seen in over a week) Mim went over and told the dad how proud he should be of his little boy, how polite and well-mannered he was. The dad replied with some snarky comment about how he doesn’t seen that side of him. UGH. I would like to punch that guy in the face. That little boy could not have been any sweeter. It makes me sick to think that he dad does not appreciate how amazing of a little guy he has. The poor kid has been here alone the entire time and never once complained about a thing. I am going to keep him in my prayers for the rest of my life. We have a new roommate now. He is 19 and seems really nice. He is quiet which is always a bonus.

My sweet Charisma rocking a Rockstar Ronan bracelet. And seriously, could she be any more gorgeous? Love her. Email us at rockstarronan@gmail.com if you want one. They are 5 bucks. She is wearing the “nice” one which says, “Rockstar Ronan” “Our little hero”…. I also have a “naughty” version which says something not so nice about cancer….”F*cK You Cancer.” I rock the not so nice version. Alright.. seriously going to try my best to get some rest now, while Ronan is resting. Whooohoooo for almost being done with Round 4! Only 2 more rounds of chemo to go!!!! Goodnight to all of you beautiful people out there. Please spread the word about Ronan and childhood cancer in general. Together, we can make a difference!

P.S. 96,874…. as of today… this is the number of blog views I’ve had. AMAZING! I am stunned that so many people are taking the time to read Ronan’s story. Thank you to each and every one of you! xoxo