Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. ❤ ❤ I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way. 

Magic Medicine… Day 2, Round 4

That stupid pit is back in my stomach today. It is the worst feeling. Makes me not want to eat, not want to sleep…. it’s like a dull, empty pain that comes and goes. And when it is here, it is a constant reminder of what we are up against. Before all of this, I didn’t even know what an Oncologist was. Yup, I was that naive. I thought the last thing we were going to hear is your child has cancer. I still think this is some kind of a sick joke. But staring at my baby’s bald head, as he peacefully sleeps… I am reminded that it is not. And it is more painful than anything I’ve ever felt in my life. When I was driving back to PCH today, after running home to shower and take a power nap… I thought to myself, how in the world can I ever go back to a normal life? A life before all of this? In a weird and twisted way, I have come to love our new life. It is a new life full of getting Ronan well and keeping him alive. He is still here. He is still alive. He is still mine. I am so thankful for that. I remember at the beginning of all of this, when we were talking to one of the doctors here about treatment options…. he told us that if we wanted to take Ronan home, to let him be at peace and not do any of the treatments, that they wouldn’t fight us about it. His words still haunt me….how in the world could that have even been an option?? To give up on your baby and not do everything in your power to help him fight though this…I can’t even imagine. I am very thankful we caught this when we did. A month or two later… and it could have been too late. We are going to do everything we possibly can to get him well… I have no doubt that what we are doing will work.

Ronan has his chemo running through him for 72 hours straight. It is a little clear bag, full of some orange fluid. He is sleeping now, but seems to be tolerating it pretty well so far. My little fighter. Woody and I met with Dr. Eshun today to go over our plan with him for NYC. We are working getting all of the dates finalized and set. No matter what the case, my stomach always goes into knots when we have to meet with a doctor. Guess it just goes with the territory though and I need to learn to get used to it. This is not going away any time soon.

The little boy who we are sharing the room with is still alone. I hear him talking to his mom on the phone every once in a while. He just called her to ask if she was o.k…. he wants to know what she is watching on T.V. and wants to know if his dad is asleep. He sounds so happy just to even talk to his mom on the phone. I could just eat him up.We’ve been with him since yesterday around 4… and no parents have been here. Not even during the night. I cry for him. He is the sweetest little thing and he doesn’t make a peep. I want to bring him all sorts of toys and things to play with. He never asks for a thing… even after the dozen times that I have asked him if he needs anything. Sweet kid. Shitty situation. Life really is not fair sometimes.

Last night I slept about 3 hours. Better than nothing. I am paying for it tonight though… very tired. No matter how tired I am, I never sleep well here. Too many people coming in and out, too many beeping noises, too cold, etc….. It’s fine though… I could stare at Ronan all night long and never tire of it.

Before I try to get some rest I wanted to say a big thank you to The Academy House in my hometown for putting on a wonderful fundraiser in Ronan’s name. I am floored by all the people who showed up, all of the money raised, and the beautiful spirits of the young kids who worked so very hard to raise awareness for Ro’s cancer. Also, a big hug to Lisa for organizing everything and being the force behind it. The love and support from my hometown has been amazing and I am so thankful and proud to be a Longview/Kelso girl.

Sweet dreams to you all out there. Thank you for loving us, believing in us, and fighting for us. I’ve said it before, but I’ll say it again… I will never forget the love you all have shown us and I will forever be changed because of each and every one of you. G’nite<3<3<3

And P.S. Gay, I love you and your messages. Thank you for checking on me… sorry for not calling you back… will call you tomorrow. And you and your guys’ are NEVER too much for us. That was the best Halloween ever. Thank you for sharing it with us… we adore you all and are so lucky to have you in our lives.

Truest intentions, purest of hearts

I need to get my shit together today. My house looks like a bomb went off in it, I can’t stop crying, and I think I just picked my nightgown up off the floor and beat the crap out of my bedroom wall with it. Don’t worry. Ronan didn’t see this… he was playing in the other room. He did hold me though, while I cried in his lap. He patted my head and held me. I needed to let some things go today, and I did. Everyday is so different from the next. I never know waking up what the day will consist of, how I will feel, or how Ronan is going to act. The inconsistency in my life makes me nervous and anxious. Today, I have had a pit in my stomach the entire day and I can’t seem to get rid of it. The reality that surrounds us is overwhelming at times. Thank god for good friends who I can call on. My friend, Gay, called me right when I needed her most. My friend, Pamela White (who has been a GODSEND) let me vent and gave me advice…. Little Jack’s mom, Laurie, always puts me at ease. Just hearing her voice and the updates on Jackers helps me get though the days. To people who are walking to the end of the earth and back for us, to the people who refuse to let go of my hand, to the people bringing dinners and helping with Liam and Quinn, to the people who know just how to make me smile…. Please know how thankful I am for you. The fact that you are walking though this with us and supporting us so much, means the world to our family. We are so lucky and thankful for all of you. It speaks volumes about the kind of people you are in the way you choose to live your life and I will FOREVER be thankful, humbled, and amazed<3 You all have changed my life and the way I view the beauty of family, friends, and strangers. You have taught me to question everything and accept nothing but the best for me and my family.

Last night I went out for dinner with 3 of my dearest friends. I was able to let go a little bit and live in the moment surrounded by strength and love. I went to the best restaurant in town, Tarbell’s, with my friends, Niki, Jen, and Lindsey. The place was packed, food was amazing as always, and the service was above and beyond. And it has nothing to do with the fact that I was with the bosses wife;) I sat with my 3 darlings, for 3 hours. We shut the place down and I left there feeling extremely blessed to have spent the evening surrounded by those 3 incredible women. They are more than friends to me; they are my sisters. I would trust them with my life and the life of my children. They are the type of friends who would never let me down or let me fall without picking me back up. I need them more than ever at this time in my life. I get that I am asking a lot from my friends right now…. but my true friends, are the one’s I have to ask nothing of; they just give and do because  they have the inner strength to see me through this. Their intentions are true and pure… there is no bullshit or superficialness. I worship them and if the tables were turned, I would be there for them in a heartbeat. They know this of me… they get the bigger picture of all of this.

Once Liam and Quinn got home I put everything that has been going on inside my head, on hold. I made them a snack, took them for shaved ice, and we went outside and played in the backyard for 2 hours. We took every ball in our house and put it in our big, grassy yard and played soccer and dodgeball. Ronan had a BLAST. He ran, kicked and threw his balls for an hour straight. The strength and power that boy has when it comes to anything physical is insane. He is so coordinated and fast. We took a bunch of glow sticks when it got dark and shaped them into frisbees and threw them up in the air and at each other. It was an evening full of laughing and playing. Woody came home, scarfed down some dinner (thanks Jules) and took Liam and Quinn over to The Village for basketball practice. My poor, tired, husband. He worked so hard today.. and I can tell he is exhausted. But he will never let us down or complain about anything. He came home with a smile on his face and a big kiss for me and off to practice they went. Love that man.

I feel like a kept woman with Ronan. Seriously. The little man decides my every move. I’ve got to get some control back with him. My sweet Sarah, whom Ronan LOVES… came over to peel me off my floor today. Ronan threw a fit about having her here. I can’t win. I need help, want help, ask for help…. but Ronan is so territorial of “his house.” He wants nothing to do with visitors and ends up slamming doors and screaming in his room the entire time someone is here. And Sarah is like family to us. He let her stay for a little bit after I bribed him with a toy and we played Star Wars with him. Sarah took over with the playing and I was able to get a few things done around here. Then we “locked” Sarah in the laundry room (that was the only way he would let her stay) so she could fold my laundry. Sarah the Saint. She has been so helpful to me and I know she would do whatever I needed her to, if Ronan would just relax a little. I have a list a mile long of things I need to get done before we check into the hospital for Round 4 of chemo on Monday. Tomorrow, we go to the clinic and I am hoping to help in Liam and Quinn’s classroom for their Halloween party. That leaves me Friday to get everything done. The weekends are usually pretty busy around here and I don’t want to spend my time getting caught up when I could be spending it with my boys.

So tired tonight… but one last thought….All of his kisses mean that much more. Every smile, laugh, hug, I love you, that come from Ronan, wash away all of the sadness and anger that I feel… for a few moments. It doesn’t last long, but it is oh so sweet.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” -Dr Seuss (Thanks Dana)

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

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.

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!

The happiest day of my new life

I got a phone call from Dr. Maze today re: Ronan’s scan results. He told me as much as he could, which was so nice of him to do. Waiting is the hardest part and he instantly put me at ease with his news. Woody heard from Dr. Eshun around 5:00. We have some very good news to share tonight. 2 weeks ago we were told to expect the mass in Ronan’s abdomen to shrink around 20-25 percent, but not much more than that. Dr. Eshun told us tonight that the mass has actually shrunk 47%. That is huge news for us! We could not be happier with those results. It is still in his bone marrow, and there are a couple of other areas they are going to watch… but nothing else has progressed or started to grow, so Dr. Eshun is very pleased with what he is seeing. I fell to the floor after hearing this news… and cried like a baby. All I could think about was how I knew Ronan would fight this as hard as he possibly could. He is proving it by the results we are seeing and how well he is handling everything. He is so unbelievably strong. He is fighting so hard for us all of us, because he loves us all so much.Today has been such a happy day for our family, a day full of hope and a big sigh of relief. We still have a long road ahead of us, but today was a victory for us. Tonight, we will sleep a little better and dream a little sweeter. We are so full of hope and joy and are going to continue to love Ronan so deeply and so much that it kills all of his cancer. We are doing everything we can to surround him with positive energy, laughter, and love. We will continue with his treatment plan and pray that we continue to see amazing results.

I had lunch today with 3 lovely ladies. I finally had the chance to meet another mom, Lara, her son was diagnosed with Neuroblastoma and he is now 10 years old. They live here and are very involved in raising money to fund less toxic treatments for this disease and to find a cure. I cannot tell you how much meeting her meant to me. Her son, Noah, is alive, healthy, and is so full of love for life. He beat all of the odds and is living proof that miracles do happen. Lara gave me a lot of great advice and seeing her courage and strength was so very inspiring. I can’t wait to meet Noah someday and introduce Ronan to him.

I  also saw a therapist today. I knew within 15 minutes of our session that she was the one. Intelligent, compassionate, and we meshed well. She gets it. You want to know how I really knew she was the one for me?? She asked me about Ronan’s cancer, she asked me to tell her what his treatment plan entailed. I went through the list of 5 rounds of chemo, surgery, another round of chemo, stem cell transplant (maybe 2), Radiation, and the last blast of antibodies. She looked at me and goes, “Does cussing offend you?” I go, ” No, quite the opposite.” And she goes, “Good. Holy shit.” Ahhhhh, a woman after my own heart! I loved that she was so raw and blunt. I don’t need any sissy pants, sugar-coating, therapist. I need someone who understands that this is one of the worst possible things to happen to a parent and who can look me in the eye and tell me it’s bullshit, but she can figure out how to get me through it, so I don’t have to check myself into a loony bin. This lady is going to be that person for me, I can already tell. I feel better than I have in a very long time. I can see little pieces here and there of our old life coming back. It’s like there are little flickering pieces of glitter floating through the air and every once in a while I’ll catch one. I caught one yesterday when I spent a few hours with Woody. We went furniture shopping and to lunch. I can’t tell you how important those few hours were with him. I allowed myself to forget about Ronan’s cancer for a while and just enjoyed spending some time with my husband. It was a beautiful day spent with a beautiful man.

I just want to tell each and every one of you who are reading this blog, following Ronan’s journey, praying and thinking about us, thank you from the bottom of my heart. I will say this over and over again until the day I die… I know he feels your love and I know all of the love, prayers, and positive energy are working. There is only so much medicine can do, so please continue to do whatever you are doing for him:)

Staying sane… or at least trying

Today was an easy day. It reminded me of our old life which was nice, but bittersweet as well. We spent the day at home and ran to the hospital for about an hour. Then we went and got shaved ice and headed to see our favorite friend, Halle, at our dry cleaners. It was a quiet day around the house until the twins got home. We spent the evening playing and laughing. My friend, Bethany, dropped off dinner. It was very therapeutic to see her. She is someone I don’t know very well, but I feel like I do. We grew up in the same town, I was friends with her younger sister, and Bethany and I connected last year though Facebook. Her little boy, Madden, went to preschool with Ronan. She was trying so hard to hold it together for me, but we both ended up crying a bit. It was nice to talk to her, to hear how her family prays and thinks about us everyday…. it was nice to have a bit of my home in front of me.

Liam and Quinn had basketball practice tonight and are still gone with Woody. Ronan is already fast asleep. I kept myself busy tonight picking up the house and venting to my father about some things that are bothering me. UGH. I am tired of keeping things inside and he made a comment to me earlier today that upset me. I called him back and told him I thought he was being insensitive. I should have just let it go, but I couldn’t. I think it may be best to separate myself from some people for a while. I can’t deal with the day-to-day drama anymore. I am tired of having people compare what they have went through in their life, to what we are going through. For most people, life is what you make of it. It’s called choices. We didn’t have a choice with Ronan getting cancer, but we do have a choice of how we can handle it. I am trying to stay sane and focus on my beautiful husband and children. I am trying to focus on all the positive things like how well Ronan is handling everything. I see a light at the end of the tunnel because I know Ronan is going to win. My beautiful baby will not be destroyed over this disease; we will get him through this.

Tomorrow we have a big day. We check in to PCH at 3:00 for Ronan’s scans. He has an MIBG, Bone marrow, and MRI. I told Ronan today all about coming back to the hospital tomorrow because I wanted to prepare him for his long day. He told me it was o.k. and asked if he was going to get put to sleep by Dr. Maze. I told him yes, and he said it was o.k. because, “He’s so nice, mama.” It was really sweet. Ronan is getting very used to his new way of life. It still makes me mad and it’s still not fair but I am thankful that my angel baby seems to be coming to terms with it and is accepting that this is just the way his life has to be now. I hope he understands that it won’t be like this forever. Someday, we will have our beautiful life back, and we are going to appreciate everything so much more. Sometimes, I think I am lying to myself when I say that because I did appreciate all the things we had. I guess it is a lie that I am going to continue to tell myself throughout this whole ordeal because thinking that life is going to be so much sweeter and better after all of this gives me strength and pushes me forward.

Today when we were at the hospital, Ronan asked me where Auntie Karen was. She is out of town for the week on a much deserved, fun, vacation. He told me he wants to see her and misses her. I told him I miss her too, but we will see her next week. We love you, Auntie Karen. We hope you are having the best time and Ronan can’t wait until you get back so he can tease and love you. Goodnight to you all out there… I hope you are hugging your loved ones extra tight, every night.