Knock on wood

Today is day 8. Every time Ronan starts his chemo treatments, his blood levels are supposed to drop after 7-14 days. Which means, less energy, his immune system is low, etc…. Nothing yet. I took him to the clinic yesterday and his blood levels were still good. He has been full of energy and has been running around non-stop. Let’s hope this continues. Woody and I can’t get over him and how great he looks, for being so sick. None of this makes sense at all. I am just taking this as another great sign that Ronan is going to beat this and pray we continue to sail right through this. For dealing with something so difficult, he has been a champion…. not acting like a sick kid at all.

We have been taking advantage of being at home and doing normal things. The boys’ have been playing together non-stop. The love my 3 boys have for one another is so powerful and moving. It’s helping us win this battle. Last night Ronan cuddled up in Quinn’s bed and fell asleep with him. I left him there all night and only got up a few times to check on him. He slept peacefully the whole night through and woke Quinn up around 6:30 this morning to play. Ronan was upset that the boys had to leave for school this morning but I kept him busy. We ran some errands and I even took him into Target. Shhhhh! Don’t tell Woody;) I took him in to grab a few things, the store was empty, and I didn’t let him sit in a shopping cart. Poor kid has been begging me to take him for weeks now. We were very careful and I sanitized his hands about every 5 minutes. It made his day. He just wants to do normal things, like we used to do. So we did<3 And we will continue to do things as “normal” as possible. I am getting used to the looks of pity when we go out into public and Ronan doesn’t want to wear his hat. It doesn’t seem to bother me as much anymore. Heck Ronan doesn’t even care or notice, so why should I??

As of now, Ronan’s surgery is scheduled for the end December. I have a nice little story about the exact date of his surgery. I was telling my new friend, Pam, who has the little girl, Victoria, who is a cancer survivor, when it is going to be. As soon as I told her, she got a little quiet and goes, “Oh my god. That is the date that Victoria’s surgery was.” Same surgeon, Dr. La Qualia and everything. Another one of those good signs that I’ve been seeing during through this entire journey. We both got goosebumps and I got teary eyed. So Christmas in New York it will be:) Just wish it were under different circumstances but we are going to make it the best Christmas ever. As my dear Karen keeps saying, it’s one step closer to Ronan’s wellness.

Our next round of Magic Medicine does not start until November 1st. Until then, if all goes well, we will just be making visits to the clinic twice a week and we will be home the rest of the time. There truly is no place like home. Tonight, we went for a walk down to the our neighbors house. Ronan ran the entire way, only turning back to catch the football we were throwing. We had a great walk with our friends and enjoyed the cooler weather. It was the perfect evening and I was so happy that we were all together as a family.

I fell asleep early tonight, cuddled up to Ronan. Only wish I could sleep the whole night through…. ended up waking up in a panic and now my mind will not be still. Too many unknowns and worries keep me up. How do you sleep when the baby right next to you has cancer?? I woke him up to tell him I love him a few minutes ago. I tell him that 100 times a day. None of this has gotten any easier, but it has become our new way of life. This is not a life I would wish on anyone, but it is our life now and we will make it as happy and beautiful as possible. To be any other way would not be fair to Ronan or the twins. I know how important consistency and security is in a childhood. Especially in little guys who are 7. They will remember most of what we are going through so we have to make sure we make this as positive of an experience as possible.

Woody came home tonight with his hair buzzed super short. So sweet and cute of him to do. Ronan loved it and kept wanting to feel the top of his head. His long eyelashes are starting to go, as well as his eyebrows. His eyelashes are still there, but they are not as thick as they used to be. It just makes him that much more beautiful. Every feature on that child is beyond perfection.

So, if you don’t hear from me this week it’s only because I am taking full advantage of my healthy baby and being home. This week has been spent playing catch up on all the things I am behind on from being at the hospital all last week. It is amazing how far behind I can get on things around here.

Sweet dreams, friends. ❤

Magic Medicine…Day 4, Round 3

Today was a tough one. Ronan woke up mad that we are still here and he was still hooked up to his machine. I’ve got to come up with a name for his “pole.” Anyway, he wanted to be unhooked so badly and Dr. Maze must have talked to someone because they agreed to let him free for a couple of hours. The only catch was he couldn’t be unhooked until 10:45 a.m. Time means nothing to a 3 year old. All he knew is that he wasn’t getting unhooked right that moment and he was mad. I had a nurse in the room with me and Ronan threw the biggest fit for a good 20 minutes, screaming, hitting, pulling out cords and some of my hair. Oy vey! After I calmed him down, with the help of my nurse his little body finally gave in and went limp. I held him and started bawling. Kim, our nurse sat with me and rubbed Ronan’s back and tried to do her best to comfort me. She was really sweet. After that episode we went to the playroom for the rest of the morning and soon my friend, Sarah, aka the baby whisper came to give me a little break. Sarah is the one who was with Ronan when they finally let him off of his machine for a couple of hours. She said as soon as he was unhooked, he went running as fast as he could down the hallway. They played outside on the playground in the blistering heat for a long time. He was so hot, sweaty and tired from his hours of freedom. I am sad I missed it, but I really needed a break.  I went home and was pretty frazzled. After last night and this morning my emotions were running wild. Somehow I ended up in Ronan’s closet, on the floor, crying and calling my therapist. Imagine my surprise when she actually picked up the phone and I didn’t get a voicemail. In this day and age that is unheard of. Especially in our situation… to get an actual person on the phone without going through 10 other people, or going straight to voicemail is something that never happens. This is another reason that I know this is the right person for me to be talking to. Sarah picked up and I told her what was going on. We worked on finding a solution and what I am going to need to help me get through this time. I know there is not one answer to this problem… many things are going to help me get through this. She is helping me work on taking baby steps to get there. After our phone call, I felt a little better and took the next few hours to try to calm down and get a few things done around the house.

Woody and E.J. made it safely to New York. I will be waiting on pins and needles tomorrow to hear what the doctors have to say. I really hope they are in agreement and are encouraging as far as our plan for little Ro goes. This is a chapter in our book that we need to be closed. No looking back, no regrets. I will be glad when this part is done and over with.

We are hopefully getting out of here tomorrow, but I’m not sure. Ronan has to be hydrated after his chemo for 24 hours… so the nurse told me it may be Saturday morning before we can come home. I don’t know how in the world I am going to hold him off for one more day. He is like a caged animal in this place. He is doing really well with this strong dose of chemo though. He has only gotten sick to his stomach a few times which is amazing considering how strong of a dose it is. Knock on wood that it continues this way.

So that it all for tonight. Short, sweet, and to the point is all I’ve got to give.

Nighty night<3

78,456

This is the number of Rockstar Ronan blog views…. WordPress keeps track. I know I am only one person, but I am one person who is going to make a difference in Pediatric Cancer. If Oprah won’t listen, someone will. My dear sweet Charisma Carpenter, who is technically challenged (she admits this) has started up a Twitter account. She has been tweeting away and already has almost 15,000 followers. She has been tweeting non-stop about Ronan and his story, sending traffic our way. Thank you, CC. I thank the stars above everyday that fate brought us together that one summer day and our friendship bloomed and stayed strong. So cheesy, I know but it’s true. You have such a powerful voice and if anyone can get his story heard, it’s you. I love you so much.

His little voice deserves to be heard,  as well as all of the other babies/kids who are voiceless out there. I am amazed and truly inspired by all of the people out there…. long lost friends, friends of friends, family, even strangers from France to Australia who are passing around Ro’s story. He will be heard and his story will be shared. Thank you EVERYONE. It is because of all of you helping me fight for him, that I promise you more awareness will come of his disease and other kinds of Pediatric Cancer. Keep spreading, sharing, and loving his story. He is worth it, he deserves it, and he will win this fight. I love you all!!!!

Magic Medicine… Day one, Round 3

This chemo is going to be rough. This is the stuff that causes major vomiting… and a few other side effects that we will PRAY hard, do not happen to Ronan. Hearing loss is a big one. High pitch hearing loss to be exact which I can absolutely live with, if it means keeping him alive. I am hoping and praying that Ronan tolerates all of this well, without a hitch. If he can get though these 4 days, this baby can get through anything. Our poor roommate next to us. He is an older boy, feeding tube in his nose, his parents are nowhere in sight… working I’m sure. Every once in a while I hear him on the phone, crying about how he can’t eat. Poor sweet boy. As awful as all of this is, I am so thankful that I am not a working mom and can devote all of my time to taking care of Ronan. We are so fortunate for being in such an awful situation. I can’t imagine having to leave Ronan in the hands of others to go and work. Thank god for Woody, I thank god for him everyday of my life.

Today has been great so far. We spent the morning home, getting ready for our week here. I have the laundry all done, house all clean. Niki stopped by to bring me coffee and Ronan actually came out of my room and played with her for a bit. We headed over to the clinic to have Ronan’s counts checked to make sure he was good to go to start this round of chemo. Ro was very excited about seeing our nurse, Sharon and followed her around the clinic while we were there. We didn’t have to wait long to get a room which was nice. We got checked in very easily and fast. Once we got up here we played in the playroom for awhile. Ronan was full of energy. He is sleeping now.. he didn’t nap today and is taking a late nap. They are going to start his first dose of chemo soon. I am anxious to get it started asap. The sooner we get it over with, the better. Trish is going to come by and bring me dinner and Woody is going to pop in as well.

We are in the same exact room that we were in when we were first admitted to the Oncology floor. It gave me major anxiety, walking in here. I tried to talk myself out of a panic attack but it didn’t work. I almost passed out on the spot. I am fine now.. I had Woody stay with Ronan so I could go downstairs and have a conversation with myself about how I need to suck this up and be strong for Ro. This whole floor brings back so many awful memories for me. It was a very hard 3 weeks when we were first here. I keep telling myself if I survived three weeks of this before, a week will be a piece of cake. Fucking cancer. I still can’t believe this is happening to our precious baby. It is a parents worse nightmare.

It’s going to be a long night. We are still waiting to start the chemo. It has to be double approved by the pharmacy before they can even deliver it, and the person who has to approve it, does not even get in until 9:00 p.m….. hopefully Ronan will stay asleep during the whole process and will not have any side effects. Trish came to visit and brought some homemade pumpkin soup. It was delicious. Woody also came by and brought CPK for all of us. While they were here, Dr. Maze stopped by to check in. It is always nice to see him, Ronan talks about him all the time and always asks me if he is going to carry him to sleep. So sweet and funny. We talked to Liam and Quinn tonight and it sounds like they are having a great time in Colorado. They got to spend some time with one of my best friends, Susie, who lives there. Wish I could have been there with them. Ronan talked to them both on the phone tonight. He misses them just as badly as I do. I hate that they we all have to be away from each other so much now. I will never stop being bitter about that.

Wish us luck tonight. Hopefully Ronan won’t even notice the chemo and will sleep right through all of it. Goodnight dear friends.

A long week ahead

Our weekend was a great one. Ronan is still refusing to act or look sick which makes this whole thing so much easier on us. I can tell his beautiful eyebrows are starting to go, but his full eyelashes are still hanging on. He looks so beautiful. On Friday we had family game night and just played at home. Ronan was of course thrilled to be spend the night with this big brothers. On Saturday Liam and Quinn had their basketball game. We were brave and let Ronan go. He was in heaven. His BFF Winston came to watch as well. It was their first mini reunion. They were both shy at first and wouldn’t even look at each other. Ronan stayed right on my lap. By the second half of the game, Ronan went to sit by his big brothers on the court and Winston soon followed. They sat by each other, talked, played, and laughed. I had to fight back the tears. It was hard to see but also beautiful to watch. Ronan took off his hat during the game and I could see other parents staring at him… also hard for me to see. I am fully aware of how sad our situation is but being out in public with him, seeing the look in other people’s eyes makes it so much more sad and real. I am so happy we took him out though, I think Woody is starting to realize that it is o.k. as long as we are making sure he washes his hands a lot and we don’t have him around people who are sick. We won’t be going to the grocery store or anything like that with him, but I think it is important for his well-being to get to do some of the same things he used to be able to do.

Saturday night we had Kay, Charlie, and Uncle Ron over to watch the ASU game. The Devils won, so it was a good night here. Liam and Quinn went home with Mimi and Papa because they had to get up early on Sunday to leave for the airport. They left for Colorado for the week for their Fall Break. Ronan was very upset about that, he was crying really hard as they got into the car. We finally got him settled down, but he is still talking about them and saying he wants them to come home. It’s better that they are gone and off doing something fun. Ronan and I have a very long week ahead of us. Last night Auntie Karen and Olivia came over to watch Ronan so Woody and I could go out for a bit. We were both tired but agreed we should take advantage of sneaking out for a bit. We didn’t do much… went for a drive and then stopped at Target. When we came home, Ronan was asleep so we hung out for a while and listened to Wood’s 45 record collection together. It was a very sweet date night. Simple but sweet.

Today, Ronan and I will head over to PCH around 1:00 to get checked in. We will be there for the entire week for Round 3 of his magic medicine. I am trying to have a positive attitude about it as far as staying the entire week in the hospital goes. It sucks that we can’t be at home… I know how much better Ronan does here. I will just have to keep his spirits up by bringing lots of things to read and we will have to go for a lot of walks. I don’t want his little legs to get weak again by sitting in a hospital bed all week.

Woody will be flying out to NYC on Thursday to meet with the doctors at Sloan Kettering. I am excited for him to get out there, talk to the doctors, and then I can be sure that the path we are choosing for Ronan, is the right path to take. New York is my absolute favorite city and I’m trying not to be sad about the reason Woody is going out there. It has always been our favorite place to visit together. Someday we will go back, as a family, and celebrate Ronan being healthy and cancer free.


Yesterday was the Susan G. Koman breast cancer walk in Phoenix. SO MUCH PINK! AMAZING! Pediatric Cancer awareness was last month. Did you see the sea of Yellow anywhere? Take a minute to think about that. Pediatric Cancer is the #1 killer of children of all childhood illnesses combined!

One flew over the coo coo’s nest… and that one is officially me

When going through something like this I’ve learned that at times you will feel crazy. And at times, people will make you feel like you are going crazy… and tell you things like you need medication. But somehow… if you are strong enough, you pull it all together… get all the little voices out of your head, refocus, and find your way back. It can take something as simple as taking a drive, screaming your lungs out and just taking 30 minutes to be alone, to bring your strength and sanity back. Game on, cancer. You have pushed me down but I will not stop fighting back.

I have also learned that I can no longer take things day by day. My world now consists of hour by hour. One foot in front of the other. Apparently, there is a certain way you are supposed to act and behave when your child has cancer. I have not been following standard protocol because I am only human. Until you have walked in the shoes of a mother who’s child is sick, you cannot pass judgement or tell them what is right or wrong. I know I am making mistakes, but they are my mistakes to make. As of right now, I am thankful I am able to pull myself out of bed in the morning and take care of my baby. That right there is a victory to me in it’s own right.

I said from the beginning of all of this that this blog was going to get ugly. I love the days that I am happy, positive and full of light. Unfortunately, this can’t always be the case. This is my blog… my honest blog and a lot of it is going to be the way that I am feeling. I will of course update you on how Ronan is feeling, his progress, his victories…. but there is going to be some other things in here that are not so fun to read. If you are not down for that…. the bus stops here. This is my outlet and my truth and I won’t be shut down.

Now that I’ve gotten that off my chest I can update you on how Ronan is doing. To say he is doing amazingly well is an understatement. He is so full of spunk and energy it’s like we have 3 Ronan’s running around the house. He enjoyed his weekend playing with his Nana and brothers. There was a lot of Nerf gun shooting going on in our house. Tomorrow we will check his blood levels to see if we are ready to start the harvest of his stem cells on Tuesday. If that is the case, then we will spend 1 or 4 days down at the hospital depending on how easily the harvest goes. Thankfully, the process is very simple for being so complex. They take the stem cells out of his broviac so it is just a matter of how quickly the collection goes. It still makes for a long day so I will have to bring lots of things to keep our little guy busy; in bed. Lots of books, coloring, and movie watching. Maybe I’ll bring one of his Nerf guns so he can shoot the nurses;)

My mom leaves tomorrow after being here for a week. I will have to say that I wish I could have been a little  stronger and sane for her visit, but I cracked. I spent the whole week feeling like I was drowning and suffocating. I can’t help the way I am feeling or when my emotions take over.  I’m sorry for making my mom worry so much about me because I am going to be fine. I took out a lot of my anger on her  because she is my mom and I am angry about a lot of things. So, I apologize for that… nobody deserves to suffer my wrath.

I wanted to take a minute to say a huge thank you to all my Kelso Kids who supported Ronan and walked the Relay for Life for him on Saturday. Liv and Jen…. you two are my hearts. I can’t thank you enough for rallying together to making Team Ronan happen. And Olivia, your speech was beautiful. I am so proud to have you up there as my friend, talking about my baby. He is a fighter and in a couple of years we will be there walking it with you; with Ronan as a survivor.

Goodnight to all of our angels out there. Please continue to pray and send your strength our way.