Strangers on the Streets

Ronan and I slept about 9 hours last night. We both needed it as we were wiped out. After we woke up and got ready, we headed off to the clinic to have his labs drawn. He was not excited about going to the hospital today, but I promised him a trip to Dylan’s Candy Shop after. A little bribery works every time:) We went to the clinic, had Ronan’s labs drawn and I must have had my cancer brain completely turned on because instead of waiting around for his counts to come back, we just left. I don’t know where my head was today. I took Ronan to Dylan’s and then we went to Bloomingdales, Four Carrots, for lunch. I can thank my friend, Ellen, for introducing me to this spot. Ronan ate a ton and I let him have the worlds best frozen yogurt afterwords. He was in heaven. After a few hours out in the city, we started our walk back to the RMH. I looked at my phone and realized that I had missed a couple of calls from Sloan. I listened to the voicemail and it was one of the nurses saying that Ronan needed platelets as his counts were only 18,000 and they like to keep them over 30,000. Major cancer brain mush on my part. I said we could come back in, but I knew how upset Ronan was going to be. The nurse told me as long as we could come in early tomorrow morning, it wasn’t a problem. Good thing. Getting Ronan to go back to the hospital would have been a major ordeal. We came back to the RMH and I fed him dinner. We spent the rest of the evening playing in the playroom and then we came back upstairs to give him a bath. He didn’t nap today so he is pretty beat. He fell asleep about an hour ago and I am thinking he will be out for the night. We have an early day tomorrow so that is a good thing. Fernanda gets in at 6 a.m. and I cannot wait to see her. I could really use some of her amazing strength to recharge me right now.

While we were out in the city today I tried my hardest to ignore the looks we now get from strangers everywhere. The looks from strangers on the streets are now looks of pity, looks of sadness, and as strong as I try to be… these looks kill me. It is a constant reminder of what we are up against. Most people are extra sweet to us, everybody says how beautiful Ronan is, and I must have been asked 1o times today how he is doing. What am I supposed to say to this? I say the only thing I can; while fighting back the tears and plastering a huge smile on my face. I say he is doing great and is a very strong little boy. I am sure these strangers on the streets only have the best intentions, but all I want is feel normal for 5 minutes out of the day. All I want to do is to not be felt sorry for. I guess this is why I am so comfortable in our hospital environment. Being out in the real world takes so much energy and can be so draining. I feel like I am on constant guard to not only protect Ronan, but myself as well. When I’m out in the real world, with Ronan, my guard is up 110%. I wish I could tell these people, stop with the looks of pity, instead take this gift of mine and go and do something amazing in the world. Go make this world a better place because you are inspired by my sweet baby boy because your own problems aren’t half as bad as you think they are. I swear I’m going to start wearing a sign around my neck that says this. Ronan is something to be inspired by, not something to feel sorry for. Yes, he has a tough road ahead of him but he will win this fight and be an even more amazing of a human being because of it.

Alright my sweet friends. I never indulge in T.V. anymore but with Ronan sleeping soundly, I’m going to enjoy my favorite reality show, “Bethanny Ever After.” I love Bethanny Frankel and her show. She cracks me up. I hope you all had a wonderful day and have an extra sweet night. Love you all.

xoxo

Welcome back, hospital insomnia

Beeping machines. Check. Headache. Check. Cold hospital room. Check. Missing Woody. Check. Hospital insomnia back. Check. Check. Check. Where does this leave me? Miserable. With a foggy head. I really, really, tried to go to sleep without my sleepy meds tonight, because I thought I left them at the RMH. I’ve lain awake for 3 freaking hours now. Tossing. Turning. Had a slight panic attack and thought I couldn’t breathe. It was only out of sheer terror and desperation that I dug though another overnight bag and thank the lord, found my Ambien. Waiting for it to kick in and trying to ignore the little voices in the back of my head saying they can’t believe I have to take prescription meds to go to sleep. STFU. Nothing to feel guilty about… but was all so foreign to me, until now. I gag taking Advil.¬†Never in my life had I had to take medication to sleep. Sleep always came so easily and peacefully to me. Guess that changes when your child gets cancer. At least it has for me. Everything has changed.

I tossed and turned and sat and over-analyzed everything like I always do. I worried myself into a panic about a friend who is flying back to Phoenix tonight. I told him I needed to know he was safe so I could sleep better. I texted Woody to let me know when he arrived to Phoenix because I needed to know that he and Quinn were safe. I sat and obsessed over these things tonight for I cannot take something else happening to the people I love. Now, I will sit here and obsess over my mom getting into New York safely and hoping that she easily finds her way to the RMH. She’s never been to New York and I can tell she is nervous. I wish I could be there to meet her but all I can do is sit and wait for her to call so I know she’s o.k. I worry a lot when I don’t sleep and my overactive imagination goes into full effect. Then there’s the damn beep beep of Ronan’s fucking pole again. I have to get up, buzz the nurse, and say, “We’re beeping!” I’ve done this only 5 times tonight. Awesomeness. I much prefer my coma induced state of sleep that I was able to have the past few nights while I slept at the RMH with Quinn. My little blue friends better start working soon or I am going to be a zombie tomorrow and I hate being that way. I was so looking forward to some nice time with my mom and Ronan… do not want grumpy Maya to make an appearance. Nobody likes her.

Our roommate is really sick. So sick that I can’t sleep because I am so sad for him. He has a very rare form of brain cancer. He has a big bump on his head from it and can’t really talk or move. He is a little younger than Ronan, with the most beautiful face and the longest eyelashes. His parents are such good parents too. You can tell that they are as in love with each other as they are their son who is fighting so desperately hard for his little life. They sit and play memory and other games with him all day, but he gets tired easily. Today, he slept the entire day and has thrown up on and off. I wish I had a magic wand to make him all better. If love could fix the problem, he would be healed because the way his mom loves him is one of the most beautiful things I’ve ever seen in my life. She is a very good mom. And you all know I have high standards. It takes a lot for me to call another mom a good mom, and this lady should win mama of the year. Her patience, love, and kindness for her child makes me smile. It gives me hope that he is going to be fine; just like Ronan.

You know how I know Ronan is going to be fine?? Because of my insight. And because of the very insightful people who I surround myself with and they know it too. Like Mr. Sparkly Eyes, who I was texting a couple of days ago after I was having a bad day and I told him I just needed to hear him tell me that everything was going to be o.k. He responded with “I do believe Ro will overcome this.” He wouldn’t just say this to me if he didn’t feel it or believe in it. Same with Fernanda. She has great insight to things and told me this morning that she has no doubt that Ronan is going to be o.k… and she will watch him grow up into a beautiful teenager. There is something about the two of them that I trust and believe in what they are saying 110%. They are my Ronan whispers. I don’t see Ronan not surviving this and maybe I’m biased because he’s my child and maybe this is the way every mother feels when facing this situation…. but I don’t know. I just have such a strong sense that these hard and scary times are going to be worth it because in the end, he will still be here; where he belongs which is on this earth doing amazing things. Woody and I both know it is going to take a lot of work to get our son back, but we both do not doubt that it will happen and we are in the best place where they are going to make sure it happens. I have an inner peace about this. I trust my insights, my gut, the flashes of things I get that pertain to my life. TRUSTTRUSTTRUST. This is all happening for a very good reason. A huge mother-fucking rainbow at the end of the storm!!!!!!!!!

Holla!!! New York better be prepared! Miss Macy is coming for a visit!!!!! I’m so excited! She just sent me a text saying she will be here April 14-17th. I have the most amazing friends that refuse to let me be here alone and are filling in for Woody when he is gone. Trish has her ticket booked, Fernanda is coming, Niki, Stacy, Tiffany, and I have a whole line-up of people who are dying to come out next to help. I love my friends so much. I don’t know what I would do without them.

Alright. Officially getting tired due to my “friends” starting to work. Thank GOD for Ambien. Nighty Night peeps!

Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded¬†me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo

A change of plans

Ronan’s counts are not high enough to start chemo this week. What does this mean?? It means a lot… his surgery date will now have to be changed, as well as our flight out to New York. Trying not to stress too much… everything happens for a reason, right?? We will now get to spend Thanksgiving together as a family at our dear friends’, The Kotaliks. We will go back into the clinic on Monday to have his levels checked again. They have to be up…. we need to get his chemo started as soon as possible. I am going to relax and try to stay calm about this. Things will work out. I am going to take this as a very good sign that we were meant to all be together on Thanksgiving and I am very thankful for that alone.

On a good note, Ronan has gained 2 pounds this week! That is huge for such a little guy:) Mama has been feeding him well!!

Have a beautiful and blessed turkey day!! xoxo

P.S. I heart Tina Fey and this made me laugh.

Scans are done… now we wait

We are home finally from our long evening of scans. Ronan started at 4:30 this evening and was not finished until about 8:00 tonight. Dr. Maze was there, as always, to give Ronan his anesthesia. He stayed the entire time, even though I was told that he would more than likely not be there when Ronan woke up. He was, and that meant the world to us. He is truly a doctor that goes above and beyond. The world would be such a better place with more people like him in it. He takes the time to go over everything with us… to make sure we are being taken care of, listens to our question and concerns and to give us advice. We will forever be grateful for him. He has made a huge difference in this experience for us. Ronan trusts him and truly loves him. He is only really like this with Dr. Maze and our wonderful nurse, Sharon. Those are the two people Ronan trusts the most… and those are the two people I trust the most. It makes a big difference when you can look into the eyes of the person who is taking care of your child and see that they truly have a passion and love for what they are doing. I see it every time I look into the eyes of the both of them. It brings me a lot of comfort and somehow makes me feel like everything is going to be alright.

Ronan woke up really grumpy from the anesthesia. He got a little sick to his stomach and slept the entire ride home. He is asleep now and I am hoping he stays that way for the rest of the night. Poor baby. He had a hard day and spent the better part of it being upset that we were at the hospital and not at home. It’s days like today that I feel so heartbroken for him. I just want him better and healthy so he can go back to his life before all of this. I did my best and was strong for him all day long… I spent the entire time at the hospital talking him through everything and trying to distract him. He just wanted to be home with his brothers. I don’t blame him; I did too.

I got to spend some time with Tricia and Marisa tonight. They both came to the hospital so I wouldn’t have to wait alone. It was nice to sit and laugh with them. They know when I need a good distraction and waiting for Ro to come out of anesthesia is always hard for me. Thanks girls for sitting with me tonight and thanks Marisa for checking my blood sugar levels;)

This weekend we are going to lay low and enjoy our family time together. Ronan will start round 3 of his “Magic Medicine” on Monday and I just found out that we will have to be admitted into the hospital for his treatment. The dose is stronger so they will need to monitor him all week. Not excited about that but like always, we will make the best of the situation.

We should hear back about Ronan’s scans some time tomorrow. Praying for good news and praying hard. Sweet dreams my friends.