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

Magic Medicine… Day 3, Round 3

Today I am happy and my spirit is renewed. I feel really good about things. Just looking at Ronan’s determination and strength gives me such a sense of relief. I always knew he was different and special; he’s always had that twinkle in his eye like he knew he was up for a fight. The strength and support of everyone around us is also so comforting to me. Ronan has such an army of people who are pulling and praying for him. The end result of this will be something good, something big, and something amazing. I can’t feel it in every fiber of my body. He did really well with the chemo last night. No vomiting or anything but he did wet the bed. They are pumping him full of fluids 24 hours a day. He wakes up about every half an hour to pee and refuses to wear a diaper. He usually does very well with this but had a little accident last night. No big deal, we called the nurse and changed his sheets, clothes, and wiped him down. He went right back to sleep after that.

Auntie Karen came by today so I could run home and do my usual routine. I can’t tell you how much that helps me get though these hospital stays. I had a visit from an amazing mommy and new friend, Pamela White. Her little girl, Victoria, is a cancer survivor. Their story is so hopeful and inspiring. Pamela is funny, strong, and someone who has walked in my shoes and has come out the other side with the most beautiful life possible. I know we will now be friends for life. She was very encouraging and we had a couple of laughs about some things like, how wonderful Christmas in New York would be;) Being sarcastic of course. I can tell she and her husband are a lot like Woody and I. Strong, grounded, smart, and would fight as long and has hard as possible to save the life of their child. They are a prime example of bad things happening to good people. But they got through it and are living proof that life can turn out more beautifully than you could have ever expected.

Tomorrow Woody and E.J. fly to New York. Please keep them in your thoughts and prayers for safe travels. I am so excited for the two of them to go out there and meet Dr. Kushner and Dr. La Qualia. I know they will be in very good hands and come back with the answers we need to know that we are on the right path. Between Woody and E.J., no questions will be left unanswered. They will also be checking out the Ronald McDonald House while they are there. That is where we will more than likely be staying after Ronan’s surgery. It is close to the hospital and from what I hear it is a very good support system and very inexpensive which is always a plus.

Wow. How drastically things can change. My beautiful day has turned into a very hard night. I stupidly made the mistake of taking Ronan outside tonight, down to the playground. Duh, Maya. A playground? Poor guy is all hooked up to his machine and all he wanted to do was go down the freaking slide. Well guess what? He couldn’t go down the slide so I had to sit and watch my baby cry, hit, and scream for 20 minutes before I was even able to talk him into going back up to his room. Traumatic to say the least. Once we got up back to his room, he was still mad and obsessing over the playground. It has gone on almost the entire night, up until a few minutes ago when he finally passed out. My friend Stacy came to bring me dinner. She sweetly brought Ro a new Star Wars book that he does not have and that took his mind off of it for a bit, but not for long. Dr. Maze stopped by and Ronan was very grumpy to say the least. Dr. Maze tried to work his magic and asked one of the nurses if he could be unhooked for awhile tomorrow, to at least play on the playground and get some fresh air. She said she didn’t think so but he said he was going to talk to Dr. Wood for us. If that could happen, it would be oh so lovely. Just to see my little guy play and be a 3-year-old would be a dream come true. This week has been hard on him, even though he is acting like such a little trooper. Gay and Cal stopped by after Dr. Maze and Stacy left. Just seeing Cal made Ronan so happy. It reminds him of being with his brothers who he misses so very much. Cal and Ronan played and giggled the whole hour they were here. After he left the meltdown begin and lasted for about 2 hours. He was screaming, kicking, talking about the playground and wanting to go home and see his brothers. I stayed calm, tried to explain everything to him, and tried to distract him. He finally fell asleep after I rubbed his back and sang to him. Needless to say, my anxiety is through the roof right now. I need to go run about 6 miles and scream my lungs out. I know I won’t be able to sleep tonight<3<3<3 Gotta find something productive to do. Starting to write 5 billion thank you notes is sounding really good right about now.

Sweet dreams<3<3 What I would give for that.

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 2, Round 3

What a day. With little sleep last night, I am feeling very tired tonight. Hoping a few hours of sleep will come my way soon. Right now, there are too many lights, nurses, noisy roommates to sleep. They are pre-hydrating Ro before they start his chemo in a few hours. He just now fell asleep. I was hoping he would have an early night since he didn’t nap today but no such luck. That kid has more energy than the Energizer Bunny himself. It was go, go, go, all day long. We spent the morning and afternoon playing in the playroom. I remember when we first came to this hospital how long it took us into talking Ronan to even step foot in there. You’ve come a long way baby. He loves the playroom and that’s all he wants to do. Auntie Karen came to relieve me around noon and I snuck home for a quick nap/shower/laundry pow wow. It was a nice few hours to myself. I went off to see my therapist after that for an hour. It was a good session, but after I left there I was pretty upset. My friend Janet had called earlier so I returned her phone call and she let me vent/cry. Plus, she always give me good advice and encouraging words so that helped calm me down. I also talked to Liam and Quinn and that made me feel pretty good too. I know this is just a short period of time in our lives and that we just have to get through this.. but it doesn’t make it any easier. I still feel like I’m trapped in a nightmare and can’t wake up. The days/weeks/months seem like they are never going to end.

Tricia came to stay with Ronan  so Auntie Karen could leave. She said they had a blast together and my friend, Gay and her little boy, Cal, came to visit too. Trish said Ronan was in heaven with Cal here. They played for a good hour. I knew Ronan would love that since he is missing his brothers so much. He is in great spirits though and had a very good day. I cannot wait for Friday to get here so we can go home and be reunited with Liam and Quinny.

Woody came by tonight too. Ronan loves having him here and has become so much more attached to Woody than he used to be. He has been getting very upset at night when Wood leaves to go home. We spent the night walking the hallways and Ronan got to see a few of his favorite nurses, one in particular, Katie whom he loves. He was shy but sweet with her. He is so good now about letting the nurses listen to his tummy, check his blood pressure, and anything else they want to do. He like to push around his little cart with all of his medicine on it like a big boy. Makes me very proud to be his mama. He is such a sweet and special little boy.

Alright, I’m officially beat. Going to try my best to get some rest in this place. Sweet dreams.

No sleep for Mama

Still awake. Ronan is almost done with his last bag of chemo, and so far, so  good. He’s slept right through everything. I on the other hand, have not. It’s cold in this room, the bed is uncomfortable, our roomies still have the T.V. on, nurses are coming in and out, and my mind won’t shut off. No amount of coffee will help me tomorrow but I will suck them down anyway. Auntie Karen is coming to give me a break at noon so I can go home and shower. Hopefully I will sneak in some sleep then. This totally 100% sucks. But I won’t tell Woody that. He worries too much about me. Tomorrow when I talk to him I will tell him everything went fine and I am fine. I don’t want him to know how awful and hard this is on me. I’m not a weak girl… I won’t let this break me.

I know I have been asking a lot of all of you lately. But if you have a few minutes, check out this website, www.rideforleo.com. I have yet to meet the mom of Leo, but she lives here and her husband is riding from Washington State (holla!) to L.A. to raise money for Pediatric Cancer. Every dollar would help Adam meet his goal, he is almost there. Seriously, people… skip a coffee for a day and donate 5 bucks. It’s for an awesome cause. In my new life I am going to help raise as much money as I can for Pediatric Cancer. It’s something that needs exposure and funding. I have great hope that in my lifetime there will be less toxic treatments, as much exposure as Breast Cancer, and even cures for these awful diseases. My little Ro is going to have to suffer through this when in this day and age, there could be a much easier way if the funding were there. There has to be a better answer than this chemo crap.

Thank you for taking the time to follow our journey. It is going to be a long one indeed. G’nite, my friends <3

 

Update~ Ronan woke up the night vomiting everywhere. He is sleeping peacefully this morning and I am hoping we can keep this under control today. Sweet baby Ro, I love you so.

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.

I couldn’t have said it better myself…

A girl whom I’ve never met, Jennifer, posted this on my FB wall:

I’ve gone to the book store and seen a pink Bible. I’ve gone to the grocery store and seen pink reusable shopping bags. Pink yogurt lids. Pink ribbons on chip bags, ways to donate by buying certain items. I’ve seen pink on TV, heard it on the radio, seen it in my email and had it thrust in my face at almost every retailer. Don’t get me wrong, I want to take NOTHING from breast cancer sufferers and survivors. I know they worked hard to get where they are. I just want the same for the children that are also fighting. They need us too. Even more, their voices are smaller and their hearts are bigger.

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!