Tag: the good doctor

Rain in May

Ronan. I have no idea how I survived today. Actually, I do. It is because you are amazing in everything you do. You were amazing during your time here with us and you are amazing even though you are gone. Gone. It’s a word that I’ll never get used to. I know that was you today; you who made it rain in Arizona in the middle of May. You knew I was going to have a hard day and you know how much I love the rain. It’s one of my favorite things in life; especially now since I don’t get to see it very often. You knew it would make me smile and think of you. You made it pour and you made take the time to be still in breathe in the clean air and just be for a few moments. I know it is making you uneasy how restless I am. I know you are watching me stumble about and I can just hear you saying, “Moooooommmm! Don’t be sad!” I hear you tell me that a hundred times a day. I felt your little kiss on my cheek today as the rain splattered down on my face while I was watching your brothers play on the playground at school. I keep telling myself you sent this rain to me today to make me happy; not because it was your tears pouring down to let me know how sad you are to be away from me. I know, baby. You don’t have to tell me. If anyone understands, it’s me. I miss you too.

I went off to see my therapist today and I was walking up to her office, I thought to myself…”I’ll bet I’m not even here on the right day.” Turns out, I was; but at the wrong time. Shocker. It’s a wonder I can even dress my self appropriately. Sarah worked her magic and just happened to have some time to see me so I was able to get in. I saw “The Good Doctor,” first. I think we said a lot of fuck words together. He kept telling me how fucked up all this was, I kept saying it was fucking bullshit and kept asking him what the fuck I was supposed to do now. He told me he thought it would be a good idea to go and get my arms tattooed with sleeves because that totally makes sense. He was only kidding and it made me laugh. We talked about if I thought anybody failed me during all of this. I told him, no. Everybody in our life went above and beyond for us. The only things that failed us were medicine, doctors, science, and lack of funding. All of those 4 things right there killed my child. Wow. If I could have all of those things in a room with me it would not be pretty picture. I’m pretty sure I would feel no mercy for any of those things and a lot of words would be screamed and maybe a few balls would be cut off. Thanks for killing my child because you don’t have your shit together and have a cure for this disease. My son just died because if this. UnFuckingacceptable. Don’t worry about me…. my son is just another statistic now. So happy he could be of fucking service to you. Thanks for your time. I won’t ever forgive the “doctors,” until a cure is found. And it better happen before I die because if it doesn’t, I could become very old and very crazy. Old and crazy can be a very dangerous combination. You don’t fuck with an old and crazy person. It felt good to talk today. As much as I blab on here, I’m not the best at actually talking to people in real life. It takes a lot for me to feel comfortable enough with someone to talk to them openly about everything that is going on in my head. It’s a good thing that I feel so comfortable with Sarah. She makes it easy for me to open up and say the things that I’m most afraid of. I like the fact that she is not pushy with me in the way that I am feeling or how I am dealing with things. She is very good at guiding me but not pushing. Huge score in my book. I don’t deal well with pushy people. Unless their names just happens to be Fernanda, Stacy, or Auntie Karen. Those 3 can push me at anytime and I usually listen. They know how to work me like a little puppet. Well, almost;)

After I saw Sarah, I ran to meet your daddy for lunch. We grabbed a quick bite and I ate some turkey for you. I tried. I then put on my best mommy boots and went to Liam and Quinn’s school to help out in their classroom. I was nervous about it the entire day; but I knew how important it was for your brothers. It was hard for me to be there…. but I tried my best to stay calm when all I wanted to do was freak out and run away. Being around a lot of people is hard for me and it just feels wrong. I set my anxiety aside and put on my best smile for your brothers. I love them so much and I refuse to let them down by not being there for them if I am able to. We also had their team baseball pizza party tonight. It was very sweet and I am so thankful for the team they were on this year. It has been so therapeutic for them and they loved every second of it. They are sweet, happy boys whom now have to learn to start over with our family. Do you have any idea how difficult it is to go on without the little baby boy who ruled this house for the almost 4 years of his life? We all ate, breathed, drank, everything Ronan. I am not kidding when I say that baby was our entire world. He kept us on our toes, he kept us laughing, he kept us so blissfully happy. It was the 5 of us and we were unstoppable and loved every second about what we had. Now that he is gone, we have to relearn how to be a family again without him. It is the saddest thing in the world. Woody asked me tonight If I think we will ever be happy again. I straight told him No. Or if we do come close to being happy again; it will never ben in the way that we were with Ronan. Ronan was our sunshine. And we all knew it even before he could walk and talk. He was the missing link that fulfilled our family to a tee. Everyday with him was something magical and special. Everyday with him was a gift and even the twins knew this. So now what do we do?? We go away together for a while and try to reconnect as a family; minus our little guy. We don’t have a choice as it is up to Woody and I to stay strong and fix as many broken pieces as we can. We owe it to each other and we owe it to Liam and Quinn. I’m not going to let Ronan down as I know he is watching us.

That is all for tonight my loves. I love you, Ronan to the moon and back. I love you all gorgeous followers. If you give me some time, I will start taking orders for bracelets. I just ordered 1,000 of them but they will take a while to get here. As soon as they arrive I will let you know and take down your info. You can pay for them by making a donation to The Ronan Thompson Foundation. Let’s get the word out to as many people as possible! Ronan’s work is only just beginning! I forget to add tonight that while I was walking out of Fry’s on Tatum and Shea today I saw a big bucket on a display table. It had little flyers about donating to childhood cancer. I got so excited! I then looked in the clear bucket and this was late in the afternoon and it had about 3 dollars in it. I mean really, 3 dollars?? I almost went inside to talk to someone about how maybe they could promote this a little more…. like by putting Ronan’s face on the jar… but I was in a hurry to get to the boys’ school. I threw a 20 in it and I think I’ll go back tomorrow to talk to somebody. Baby steps, baby steps. It’s better than nothing as it’s a start.

I am leaving you tonight with something that many of you are not going to be a fan of so you’d better stop reading here.

But this is what I thought while driving to my therapist today. I had a huge rush of anger wash over me and I said in my head,

“FUCK GOD.” Yup. I said it and I have the balls to say I said it because it was how I was feeling at the time. Angry at this so called “God,” person that just decided to take away my child and not fix it even after all of the prayers and I know there were hundreds of thousands. So why weren’t they answered? Was it really asking too much for you to just help my baby be o.k. and give him back to me? Or maybe you are just a selfish person who wanted him all to yourself because you had never seen such a beautiful boy exist on this planet. Either way, you are a Dick. If you are really all so mighty and powerful like people think this should have been an easy problem for you to fix. I’ve decided that I’m going to have a “FUCK GOD,” shirt made and wear it whenever I hike Camelback Mountain. I have every right to be that pissed. And anyone who gives me crap about saying this…. you’re not entitled. You didn’t just lose the love of your life-like I did. Like Woody did. And like Liam and Quinn did. We have a right to be pissed off and it comes in many different forms. Today, I was pissed off at God and I am second guessing everything he supposedly “does.” He has a lot of making up to do but nothing will even come close because Ronan is not coming back and that is the only thing our family wants.

Sweetest Dreams. Thanks for not judging only embracing. Love you all

xoxo

Sparkly stars in the sky and all the one’s right before my very eyes

These are the kind of friends I have. The kind who come over to your house in the morning, bring you coffee, insist that you give them your car keys so they can go wash and put gas in your car. Not to mention pick up your prescriptions, some pictures you had developed, all while you put up a fight in which they were not having. The kind of friends whom stop by, bringing their sweet little boy with them to play with Ronan and insist on you giving them a list. The new friend, whom you have never met before, but is dying to be a part of our lives because she and her family have been so deeply touched. The friend whom lets me drop my crew off to play with her crew while I went to my therapist. The friend who let me rant and rave all while agreeing with me that this is bullshit, and she knows because she has lived through it. The friend who drops off boxes on your doorstep so you can try to pack up your life and send it to New York. This all happened today; these amazing woman helped me though today without me even having to ask. I don’t know how I got so lucky. Thank you, Melissa, Gay, Tiffany, Pam, Stacy and Bethany. You all will really not let me fall, no matter how hard I try.
Today was busy indeed. I had a mild meltdown on the way to see “The Good Doctor.” A panic attack, an almost nervous breakdown… I had to call Marisa on my way so she could rationalize everything for me. I don’t know how I made it to my appointment without getting in a wreck. But I did. The good doctor took one look at me and knew I what a mess I was. We went over my prescriptions, the doses, and we had a short but productive talk. I felt a little better after leaving there, but my nerves were shot. I am doing my best but this week has been especially hard. I have been trying my hardest to enjoy my time with Liam, Quinn, and Ronan but the littlest things put me on edge now. Any little argument between my boys is enough to make me want to lock myself up in an insane asylum. My patience is worn thin and I have the patience of a saint. I am struggling with trying to be a normal mom…. whatever that may be. I just want to be the mom I was before all of this but is is so hard.
Woody came home and I slipped out for an hour to meet a friend for dinner. Just what the doctor ordered. We sat outside, ate good food, and the weight of the world seemed lifted off of my shoulders for the hour that I was there. I found myself laughing, enjoying our conversation, and it was just very easy, as it always is. The stars were shining so brightly tonight, I kept looking up to see if I could see a shooting star to make a wish on. I then decided I didn’t need a star, because one of the most beautiful stars was sitting right before me. I made a wish on my friend, the same wish I make 50 times a day. It made me smile. I came home feeling much better about things. It’s funny how certain people just bring out the old me, the funny me, the happy me. The me that is buried so deep down, but when she comes out I so enjoy being her. Tonight was something I very much-needed. An hour of pure bliss and happiness.
Ronan is still in a lot of pain. It’s absolutely killing me as there is nothing I can do. I mostly sit and try to comfort him, get him to take his pain medication, and try not to throw up at the thought of him hurting so badly. I sit back and wonder what it feels like for his little arm to hurt so much. Does it feel broken? Does it burn? Does it throb? However badly it is hurting, I know it is intense. He never complains about a thing and watching him with this is like daggers in my heart. I cannot wait to get him started on Monday for his next round of chemo. I never in my life would have thought I’d be so happy about getting back on his magic medicine but I cannot stand to see the pain he is in. He needs it badly.
New York is going to be good. And I am going to be good once I get there. It is my Ro baby’s city that is going to heal him; I just know it. We are going to get there, get into our routine, and get him better. I know he is going to respond well to his treatments; I have all the faith in the world. New York really is a magical place and I honestly feel that energy when we are there. We always do so well and we can do this. We will do this while refusing to let go of the rope we are holding on so tightly to. We are just going to keep tying knot after knot so we can keep hanging on. We are never letting go of our rope and I am never going to let Ronan slip and fall. I will hold on to him for the rest of my life and I will be thankful for every second of it. I never knew how precious life really was until all of this. It all seemed so trivial to me…. just another day in the life of Maya Thompson. Now I know how precious our time here on earth really is because I am watching my 3 year old fight for it every second of the day. It is so wrong, so sad, but so inspiring. Ronan has made me realize that my time here is meant to change the way certain things in the world work. He is laying out a path for me and I am not sure where it is going yet…. but I am going to keep following it until I figure it out. I love him so much. My sweet little seal.
Tomorrow, we have the clinic visit for blood and possibly platelets. We will say our final goodbye’s for now, but not forever. We will be back to see our angels at PCH soon. Ronan will be back and feeling much better:) Cannot wait for that day. Fernanda is going to come to the clinic with me to work on some things. I.LOVE.HER. so much. I swear she could rule the world. Beautiful people everywhere and I never even knew it. Thank you to all of you who are keeping up with Ro and his journey. We are so thankful for the love you send his way. Someday, when this is all over and Ronan is well, we will have a big party and all 264,578 whom are reading this are invited:) Wouldn’t that be amazing?? I am totally going to get Eddie Vedder to throw a Charity Concert for Ronan. Or Tom Petty. Or Neil Young. Or all of them combined. How awesome would that be?  Mark my words. Done and done.
Goodnight to my dear friends, old and new. ❤ Goodnight to each and every one of you. Love and blessings to you all!!!!
xoxo

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 ❤

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


Heart of a mother, soul of a fighter

Anxiety is the word of the night. Not sure why… but tonight I am more anxious than I have been in a while. We had a great day; a beautiful day. We started off up bright and early and Ronan knew that we had a clinic day ahead of us. He was actually really excited about going because he knew we would get to come home after. We had all of his counts checked and got to visit with our favorite people, “A” and Sharon. I guess I am having a little anxiety about leaving PCH to go to Sloan. I’ve gotten so comfortable here and I am going to miss seeing “A” and Sharon sooooo much. They take such good care of us and are always so warm and friendly. They feel like family to me. Going to a new hospital to try to get used to “new” people seems a bit scary. But hey, in the big picture of things… I know it’s nothing to be afraid of. I’m sure everyone in New York will be just as nice…(I hope). How could they not be… all they are going to have to do is take one look at Ronan’s big blue eyes and they will fall in love with him:) Dr. Maze came over to say hello and helped me with Ronan for a bit. I was dealing with setting up our next appointments and as soon as Dr. Maze came in, he scooped Ronan up into his arms and went and sat down with him while I took care of some paper work. It was adorable, to say the least.Ronan was talking and smiling the entire time. He was so happy today.

We came home and Sarah came over for a bit so I could go and run an errand. Ro was fine with having her here and told her she could come to New York with him. He sat and named off a list of the people who were allowed to come. Sarah and Trish both made the cut;) He is very excited to go and so am I…. for the most part. I’m torn about being away from Liam and Quinn so long, and not having Woody with me the entire time. I’m making the best of it though… I’m a big girl and now is not the time to willow into a little flower. It’s time to take New York by storm and stay focused on what we are there to do. I am going to be so relieved when his surgery is over; the anticipation is already driving me crazy. I just need to remember deep breaths and that Ronan is going to be in the best hands in the world. I can do this, he can do this, we can do this.

I need to go on a run or something… Ronan is already sound asleep and Liam and Quinn are tucked in as well. The house is so quiet but my mind is not. I can’t even watch T.V. anymore…. it is so hard for me to focus on it and seems like such a waste of time. I have so much to do before we leave and I need to get a list written out of everything that has to be done before we go. Where is my Marisa when I need her. Ris’ I need you and your HELP!! She is the best at getting things done like this. I usually have no problem getting things ready to go. But that was in my old life, before Ronan had cancer. Now the littlest things seem overwhelming. I think I’d better make a call to the “good doctor” and have him up my dose of my meds…. Pronto.

Sweet dreams to you all, you lucky, lovely, people.

xoxo

When you try your best, but you don’t succeed
When you get what you want, but not what you need
When you feel so tired, but you can’t sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can’t replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you’re too in love to let it go
But if you never try you’ll never know
Just what you’re worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And on your face I…

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And on your face I…

Lights will guide you home
And ignite your bones
And I will try to fix you