Hellllllooooo Philly!


I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to  mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls.  And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo

About these ads
Previous Post
Leave a comment

19 Comments

  1. Trish

     /  April 26, 2011

    Do you know that I am a complete stranger but I find myself thinking of you and Ronan constantly? You seriously inspire me to see beauty and appreciate my children every single moment. I am NEVER going to take anything for granted. Enjoy the beautiful spring day we have today. God bless you all. Obviously Ronan has landed in the northeast today because his smile is lighting up the sky.

    Reply
  2. Dorene Plampin

     /  April 26, 2011

    Maya and family, my daughter,Chopper asked me to tell
    you that she is praying for Ro. Chopper believes in miracles as she has experienced one of her own. Her freedom from
    brain cancer. Chopper smiled and said to tell you she is a
    Professional prayer. I believe her. You are in good hands with those prayers. Keep on believing. YOu also are surrounded with so many tangible Angels.
    God bless all of you and have courage.
    Sending love and hugs, D

    Reply
  3. Melissa

     /  April 26, 2011

    Have you thought of contacting the Make-A-Wish Foundation? It is for children with life-threatening diseases. Not to sounds morbid but most people think that Make-A-Wish is only for children that are dying however that is not true. Ronan has a life-threatening disease that HE IS GOING TO BEAT so that will qualify him for a wish. I really hope my comment doesn’t upset you in anyway I just think that your family deserves something good like a trip or Ro could have his room redone into Starwars.

    Reply
  4. Glenda

     /  April 26, 2011

    So happy to hear you guys made it safely!
    Dr. Mosse sounds amazing. I’m so happy that they are moving things up to this Thursday! Yes…yes..yes!!!! So happy!!!!

    Stay strong! and continue to fight!!!
    Your army is behind you and your beautiful Rockstar!
    Positive thoughts and miracles.
    Believe and HOPE!!!

    Fight on Ronan!!!!

    Reply
  5. nancy

     /  April 26, 2011

    Maya and Woody, how blessed Ronan is to have you for parents. Amazing strength and love! Praying all day for you and for this treatment to be successful. I absolutely do believe in miracles too!

    Reply
  6. Marquita Ward

     /  April 26, 2011

    Maya..what an awesome post! I know that the Lord is working through so many people and you are letting us know. Thank You Lord! I know you are giving Him the glory from your heart. I can read it between the lines.
    God does not give up on us because Jesus gave that sacrafice..thank You again Lord!

    Reply
  7. Lauren Del Rosso

     /  April 26, 2011

    Maya,
    I am a high school classmate of Woody’s and I have been following your blog since Woody first posted the link last year. Through it all, the ups and downs, the heartache and the pain… what I admire about you the most is that I’ve never seen you defeated. Though I know that there have been moments (and many in the last few days) that you must have felt like you couldn’t wrap your head around things or pull it together for Ronan or your family, I have watched you pick yourself up time and time again, and do whatever it takes for your baby. As the mother of a three year old myself – I get it. Don’t give up. Don’t ever give up. Ronan can do this. You can do this. Your family will make it through this. Keep believing, and keep fighting!!

    Reply
  8. Laura

     /  April 26, 2011

    So happy you sound great. Our thoughts and prayers are always with your entire family through this journey. You are so smart to never give up, miracles do happen. Stay strong just take a day at a time. It truly feels great to read how positive and good you sound. I am so thankful they are moving the treatments up and working on getting him to be comfortable. I’m thankful they are giving you the attention you all deserve…you are a person not a number…how refreshing. We know things are going to go the right way at CHOP. I also thankful the our good old PCH gives you such warm genuine care. All of our thoughts and prayer are with you. Remember there are angels all around
    Little Ro and your family. All our love.

    Reply
  9. Joanna

     /  April 26, 2011

    Love you Maya. We’re in this together now! I’ll check in later.

    Reply
  10. Macy Wood

     /  April 26, 2011

    Dearest Maya,
    I cannot tell you how much joy this post brought me. You and Ronan are my heros. You have both been faced with the biggest challenge of your lives and you’re facing it head on with such determination, strength and grace. Where there’s a will, there’s a way, my friend :) There is just no doubt in my mind, that you’re sweet baby, my little BFF, is going to beat this horrible disease. Remember, this is a marathon, not a sprint and we are all behind you every step of the way. I’m escatic by how Dr Mosse has responded to you and Ro thus far. You’re starting over in another great city, the city of “brotherly love” and Dr Mosse is already showing you the compassion and determination your family so deserves. Make sure you take our little Rockstar up the “The Rocky Steps.” Quite fitting for our little fighter who won’t give up and inspires each and every one of us — every second of every day. I love you so much and know in my heart of hearts that Ro is going to be OK.

    Reply
  11. Renae C.

     /  April 26, 2011

    We will never give up on Ronan’s cute little face! It’s. Time to put on our knee pads & pray with every healing,miralce happening,strength giving, intention!!! Warrior mode is on!

    Reply
  12. Andy Shapley

     /  April 26, 2011

    Hello Maya, Woody and I met while in college at ASU. Our mutual friend Kirk M. told me about this blog awhile back. Thanks for keeping us all informed with Ronan’s progress. Your updates are so honest and true. I hope this setback will lead him to the right treatment that will cure him! I can’t imagine the pain you’re family is going through. Is it odd that Ronan feels like family to me? I guess it’s due to your consistent updates. It genuinely makes me sad that he’s in this situation.
    We have and will continue to pray for Ronan and your family.
    Lets get some positive results!
    BTW Tillman was a true hero. Everyone should strive to be like him.
    Andy, Genny and Gracie Shapley

    Reply
  13. lisa

     /  April 26, 2011

    We do not know eachother(although we have mutual friends), but I feel after all these months of reading and caring for Ronan and your family, that we are someway connected.
    I am so proud of your strength as a mother, as a wife, and as a human being facing the most unthinkable fight of her life.
    Your persistence and determination to fight this, as well as the love and support you have for Ro, will help you to win this battle.
    Much love from our family to yours
    The Lowries

    Reply
  14. Kate

     /  April 26, 2011

    You know, the woman in Canada has it right — getting booted from Sloan is a BLESSING in disguise!! These MIBG treatments are going to WORK a miracle, and if you hadn’t been kicked out of Sloan Ronan wouldn’t have that miracle!! A new chapter of healing is beginning and Ronan seriously has a hero for a mother. God Bless.

    Reply
  15. Yvonne

     /  April 26, 2011

    I hope that you all made it to Philly together and I am glad that I had the opportunity to help you guys. I had told you that if you wanted anything NASCAR wise to let me know and I mean it. You can contact me at ypittman@nascar.com. I am praying for you guys!!!!

    Reply
  16. Emily

     /  April 26, 2011

    Cancer
    Hasn’t
    One
    Possibility

    Thinking of you guys a million times a day….

    Reply
  17. Chris Pace

     /  April 26, 2011

    After watching my mother get her 6th round of chemo today, I decided to step out for a second and make some tea. A couple of rooms down was a young teenage girl asleep while getting her chemo. My mom has stage IV ovarian. I told Mom about the young girl. I’ve shared Ronan’s story with Mom since she was diagnosed last December. I normally live in your old stompin’ grounds in WA. I’ve been following the blog and praying for your family from the beginning. It doesn’t seem fair for young children and teenagers to get this stupid cancer. Since I’ve been caring for Mom in LA, I’ve turned into this whole different Mama Bear that nobody better mess with. I get so mad when anyone screws with Ronan or you. I have enough anger in me to seriously kick some ass. I am just so thankful for our nurses. It sounds like y’all have had some really great ones too. I’m so glad.
    Even though I haven’t written in a long while, I’m still keeping up, and still praying.
    Chris

    Reply
  18. Joy Gaeraths

     /  April 26, 2011

    My thoughts and prayers are with you guys always! You talk about how Pat Tillman is on your mind right now….well, the entire time it took me to complete the Tillman Race, Ronan was on mine. He is an inspirational little guy who is going to kick this shit to the curb, I know it. Your family is amazing and you will all get through this. There are so many people out here rooting for you and I know that one day, you will have your big ass party that you have talked about and we will all get to meet on good terms. In the name of Rockstar Ronan, Fuck You cancer….step off. You can’t beat this family down….they are going to do just that to you. Thanks for keeping us all posted.

    Reply
  19. Steve Gervais

     /  April 26, 2011

    I mentioned this before and agree Ronan has a lot of Pat Tillman in him. I thought of your Ro as I ran Pat’s Run and it gave nme strength to finish strong. God Bless you all.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

  • Instagram is my BFF

    Last night before my flight to NYC I washed my iPhone in the washing machine. Just as we were about to leave for the airport, Poppy started throwing up everywhere. Canceled our trip and took care of a sick baby girl all night. Today, I am thankful that she is feeling better and for the Apple care that just replaced my phone. I'm sad to miss the beautiful gold lights in Times Square, but know this is only the beginning of many beautiful things to come during the month of September. #ronan #beboldgogold #kidsgetcancertoo #fucancer #rollwiththepunches #ineedatimeout Team meeting. #poppy #ronan #fucancer #titans #littleballers #weekendchamps #basketballislife @kimmieag17 Hijacked @knjoy's pen to write her letter to the Empire State Building. #poppy #ronan #poppyforpresident #fucancer #gettinshitdone #meow
Follow

Get every new post delivered to your Inbox.

Join 24,156 other followers

%d bloggers like this: