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.

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo

Hellllloooo Phoenix

Home. Safe and sound. Tonight, my life flashed before my eyes as I pictured not having Ronan on a private jet to get him home. I seriously was almost sick to my stomach and I looked over at Trish and said, “Could you imagine if we would have had to fly home on a commercial flight??” She said no way. If that would have been the case, I don’t think I would have taken Ronan back to Phoenix. I think I may have possibly said screw the study. I know I was not going to say thank you anymore but I’m sorry, SB. You have no idea how much stress you saved me. Thank you again, and again, and again. A commercial flight would have been HELL. He is so miserable right now and was so miserable on the flight. Thankfully, he was able to stretch out and actually lay down on a big seat and rest. He was cranky, hurting, and not a happy camper at all. You should have seen the way he lit up as soon as we touched down in Phoenix and he watched as his two brothers ran and got on the plane to hug him. Oh, it was so sweet it brought tears to my eyes. We loaded everybody into the car and headed toward PCH. As soon as we approached, Ronan asked where we were going, and we had to tell him to the hospital. I watched as his little lip quivered and he said he just wanted to go home. Once again, I was almost sick to my stomach. He was so sad but was too tired to put up much of a fight. Right as we pulled up to PCH, our two favorite nurses, Danny and Arica came walking out. I could not have been happier to see them. Arica gave me a big hug and they were so happy to see Ro. They are both working tomorrow so I know that will make Ronan happy. Liam and Quinn cannot even come into the hospital due to it being RSV season. How is he going to survive without seeing his brothers for the next 10 days? We are going to have to get Skype set up pronto. Ronan is now passed out with his antibiotics running. My poor little guy. He has been through so much and is so strong and brave. I am so sad that he has to go through all of this. It breaks my heart on a daily basis; especially when I see him not acting like himself, like he is depressed and sad. I miss his laugh and smile so much. It’s been a few days since I’ve seen it. Maybe it will appear tomorrow on my un-birthday. That is the only thing I want for my day tomorrow, is to see Ronan smile.

So tomorrow is my 1.11.2011 birthday. It’s supposed to be extra special, right? No thanks. I told Woody tonight that tomorrow is officially my un-birthday. I have actually been being a little bratty about it to anyone that brings it up. I was talking to my friend Pam tonight and she goes, “So happy birthday tomorrow…like it fucking matters.” I said, “THANK YOU! Finally, someone who gets it!!!” She told me she absolutely gets it and I have the right to have an un-birthday. My wish for my birthday tomorrow is for all of you just to think about Ronan, and all of the other kids who are suffering. Take my day and pay it forward to someone else… buy the stranger behind you a coffee at Starbucks, make someone smile, and then think of Ronan when you accomplish this. Take my day and hug your kids extra tight and be grateful for everything you have. I have everything I could ever wish for in my life, except for Ronan’s health. The thought of “celebrating” my birthday seems so unimportant and silly. So no birthday for me tomorrow. Just another day, with my beautiful son, is all I could ever want or need.

So, back from New York and I’m still having mixed feelings. I’ve been pretty upset about having to return so quickly when Ronan is so not feeling well, but I know it’s not going to do me any good so I’m trying my best to change my attitude. This is just not the way I pictured coming back here at all. I wanted to come back from such a positive trip and transition Ronan back to Phoenix in a positive way. By taking him straight off of the airplane, fully healed from surgery, and back to his house and to his brothers. Not straight from an airplane right to PCH for another 10 days. But here we are, and we will make the best of it that we can because that’s just how we roll around here;). I will get Ronan through this and soon we will be home for awhile, before transplant and it will be oh so sweet.

G’nite to all of you out there. Sweetest dreams.

xoxo

Sad to leave, but have to go

The update is we are coming home tomorrow. I am scrambling, have been scrambling for a couple of days now, mentally, I was not ready to go back to Arizona. I feel like I’ve taken these past couple of days to get my mind wrapped around coming home. I feel like I am ready now. Who am I kidding, I am not ready at all. Everything about this trip has been so positive and I am beyond sad to leave earlier than expected, but we cannot fight the COG on this. The COG is the Children’s Oncology Group and they are who is charge of Ronan being on study. We have to stay on study, we want to stay on study, because we really are hoping that Ronan is going to be chosen for 2 stem cell transplants, instead of one. If we go off of study, we won’t have any chance of getting a second transplant, and after the research we’ve done, we really feel like this will increase his chances of survival. So, in a nutshell, the COG is bigger than the doctors and we just have to follow their rules. Hard for me because I really just want to give them the middle finger. I just want what is best for Ronan, and as I said before, I feel like letting him heal fully here is what he needs. But things change and now we are coming home.

Also, Ronan has developed an infection in his broviac line. He has been spiking fevers the past few days and they thought it was just due to surgery, but they tested his blood and one of the cultures came back positive. This is a minor bump in the road considering all we have been through. It is something that Sloan has under control and has been reassuring me that it is something that is treatable with antibiotics. Well, they started the first dose of antibiotics last night and as I was holding Ronan, I looked down and his entire head was red and he started itching it like crazy and screaming bloody murder. I looked at Mace and Tricia who were both white as a sheet and said, “Call the nurse, he’s having a reaction.” Sure enough, I was told, he had developed what they call “Red Man Syndrome” to the Vancomycin. The nurse came rushing in and told me they would start him on Benadryl to get rid of the reaction. I was pissed. I wanted to know why in the world I wasn’t told that this could possibly happen, and I was informed that it happens to about 60/70 percent of the kids that get this antibiotic. Gee, I wish somebody would have told me this little piece of information, just so I could have been aware of it instead of being scared to death because I did not know what was going on with my child. What if he would have stopped breathing or something?!? We were soon able to get it under control and thank god for Dr. Maze, who I was texting during this entire thing. He took the time to calm me down and explain everything to me. We had a not so good nurse last night who did not seem to know anything and seemed very nervous about all the questions that were flying her way. Other than that, the nurses have been incredible and so has the care. Last night was rough but we got it under control and were able to get Ronan settled down and back to sleep. His fevers have stopped and we will get one dose of his antibiotic tomorrow at 7 a.m. with the Benadryl before, which takes 2 hours. We will hop on our flight after we see Dr. La Quaglia and as soon we land in Phoenix we will have to go right to PCH so we can check in and get Ronan’s second dose of the antibiotic. He has to have it twice a day for about 10 days. All of the doctors here have reassured me that we can still start his chemo, even with the infection, as long as his fever does not come back. I’m even more mad about having to leave here now. How mad is Ronan going to be knowing that we are going home, but don’t really get to go “home” and he has to stay at PCH for about 10 days. It would have been so much easier to stay here. STUPID COG. If you can’t tell I’m a wreck. My anxiety is through the roof and my nerves are shot after these past couple of days.

I sent out an email yesterday to somebody who shall remain nameless, asking if there was any possible way they could fly us privately back home. Part of my panicking was the thought of putting Ronan on a flight. Within the hour, I got an email back, and then a phone call saying, absolutely, they could get us back to Phoenix on their private jet. No worries that is was so last minute, no questions asked, they were just so happy to help. I cannot say thank you enough to you, SB and Mr. B. You have just given us such an amazing gift in helping with keeping Ronan healthy. Thank you from the bottom of our hearts and I can’t wait for the day that I can personally thank you with a big hug and one of Ronan’s famous smiles. We are beyond grateful that there are such kind people in the world out there like yourselves. O.K…. SB….. I know you said no more thank you’s so I’ll stop. After one more huge, THANK YOU!!!

Last night was one of the most heart wrenching/fucked up/hilariously funny nights that I have ever had in my LIFE. Tricia and Macy (who now by the way are in LOVE with each other;))stayed at the hospital with me until about 1 a.m. Macy picked up Thai food (which was to die for) and we got some bottles of Sangria to go and smuggled them into Sloan. While Ronan slept, we ate, talked, laughed, cried, and laughed some more. Macy and Tricia got to see what my world is like on a day to day basis. Macy was bawling half of the time which in turn made me cry and our poor sweet roommate…. she had a crisis with a bloody nose, throwing up blood, and she was scared to death. She is the most beautiful 11 year old girl that I have ever met and she is fighting bone cancer. She has had 17 rounds of chemo and surgery on her leg. It was a privilege to share a room with her and her amazing mom. I tried to help with the bloody nose situation, since I have been there many times with Ronan. I went over and I tried to explain it to her and to calm her down but I wanted to just curl up and die. Her mom was on her bed holding her while her little girl sat and told me how tired she is of being sick, how much pain she is in and how scared she is. I started bawling, and when I finally went back to my side of the room, Tricia and Macy were bawling as well. In the 3 days that we spent with this little girl I heard her talk about all the things she appreciates in life and how she is so thankful for her “good days.” She is wise beyond her years and stronger than most adults. One of the most beautiful, inspiring, souls I have ever met with an amazing family who will no doubt, get her through this. Tricia, Macy and I bonded over so many things last night and Macy is now without a doubt, a friend for life.

I got all of our stuff packed up today while Tricia stayed at the hospital with Ronan. I came back to Sloan and Trish ran out to do some things. She is probably in the middle of cleaning our room at the RMH so we can be all ready to go tomorrow. Thank you, TT~ I don’t know what I would do without you. Macy came by to say good-bye to us and left me with a card. After she left, I opened it up and started to cry just from the words on the front of it. I’m an emotional wreak tonight. Ronan is depressed and told me tonight with his lip quivering, that he misses his brothers so much. Tomorrow is going to be awful. All Ro wants to do is to be home with Liam and Quinn but he can’t. I’m not even sure that the boys’ can come to PCH to visit due to it being RSV season. UGH. I don’t even want to think about how much Ronan’s heart is going to break going from one hospital to the next. Poor baby.

Tonight I say good-bye to New York with a heavy heart. I’m scared to go back to reality and back to my real world… I’m scared I’m going to lose the Maya that I have found while being in this city. As crazy as this sounds, this trip was one of the best trips of my life. Knowing that Ronan came here with a big job to do and it was so successful and positive, is maybe why it seems so hard to leave. I’m sure most of this is just my anxiety speaking. It will be wonderful to be home surround by my sweet twins, amazing husband, family and friends. I have missed you all dearly. I’ve just got to figure out how to keep this momentum going that I have found in this city. I will forever be in love with New York, Sloan Kettering, Dr. La Quaglia, Dr. Kusher, and the whole team of Neuroblastoma doctors. I will be back here next year to run the Marathon with Ronan in remission and waiting for me at mile 16. I love you New York! I feel so blessed to have had you heal myself and my baby!!

Goodnight world. Thanks for all of your love and support!!!

xoxo

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 πŸ™

Aubrey’s story. Simply amazing.

If this doesn’t inspire you to get up and do something, nothing will. It’s time to change the world, people!!!

Aubrey was just four when she was diagnosed with acute lymphoblastic leukemia, a disease that was once fatal for nine out of ten children.

“My first doctor was the head oncologist at a local hospital who spent one day a week studying at Sloan-Kettering and the other four days of the week practicing what he learned in his community,” Aubrey explained. It was the transfer of knowledge from MSKCC’s research lab to her bedside that saved the young girl’s life.

Aubrey battled cancer for seven years, enduring round after round of chemotherapy treatments at Memorial Sloan-Kettering. Finally, at age 17, she was declared to be in full remission. “I was one of the lucky ones,” she said.

Aubrey went to college and began running to take a break from her studies. In 1992 she ran the Boston Marathon and became instantly hooked. “The first time I did Boston I ran unofficially, without a number,” Aubrey said. “I decided to run the New York City Marathon in order to qualify for Boston the following year.”

When Aubrey signed up for NYC, she received a mailing from Fred Lebow, president of the New York Road Runners and co-founder of the marathon, asking runners to collect sponsor donations to benefit cancer research at Memorial Sloan-Kettering.

“When I first received the letter from Fred, I was so deeply touched,” she said. “I got a nice little bundle together that first year — about $1,500.” Within three years, the marathon program had reached its goal and raised enough to establish the Fred Lebow Chair in Neuro-Oncology.

Until that time, Aubrey had not talked about her own experience with cancer, but Fred Lebow inspired her to share her story. “I want people to hear about Memorial Sloan-Kettering and my success so they can understand the potential for success with other people. The results of their gifts then seem more tangible and meaningful. Talking about cancer is emotional, but in this context, it is positive and not sad.”

In 1997, The Aubrey Fund for Pediatric Cancer Research was established in her name.

Aubrey has run 27 marathons with Fred’s Team, raising more than $500,000, and has seen the program blossom year after year. She invests a lot of time interacting with fellow runners, and her entire family volunteers to help out on marathon weekends. “The progress that’s made in cancer research through gifts made to Fred’s Team will save lives,” she said. “Memorial Sloan-Kettering offers the best cancer care there is.”

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 β€” 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 β€” experienced athletes and novices alike β€” 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 πŸ™‚ 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