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:)

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.

Stem Cell Harvest day

Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing.  After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.

After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.

We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!

He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!

My husband is my hero

I think I have officially cracked. I’m sure I’ll have lots of times where this is the case but I think it happened yesterday. That’s where my family, friends, and husband come into play and put me back together. Especially my husband. He is my rock, my pillar of strength, my everything. I tend to overdo things in my life… this has pretty much always been a theme of mine. I’ve been overdoing everything, except the most important thing which is connecting and being present with my family. I have been keeping so busy… so overly busy… I guess so I didn’t have time to sit and truly think about what is going on. I mean, I know what is going on… but it is easy not to think about it when you have too much on your plate. This has been my coping mechanism. So the last few days, I’ve taken some time away from researching, blogging, emailing, etc…. it felt nice. Woody and I have had some good talks. Somewhere in the middle of all the chaos I forgot about my best friend; him. And I know why. It’s easier for me to not look at him in the eyes and to not see his pain. It’s easier to be too busy, because it’s hard for me to see him hurting and I don’t want him to see how scared and sad I am. But he knows…. I married one of the smartest men out there… it’s one of the reasons I love him so much. He sat me down and told me that I need to put my faith back into him and trust that he has already done all the research, talking with doctors, etc…. He did this weeks ago. I guess I just got lost in the shuffle of all of this… by obsessing. It has been my way of dealing with things. It’s not the right way and it’s not the healthy way. I see that now. I’ve got to trust the people around me more, trust the doctors, trust in all the prayers and good energy. It’s hard for me… but the person I trust most in my life is my husband. 110 percent. He is the most amazing man in the world and I know with him by my side we will get through this. Some people search their whole lives for what Woody and I have and never find it. Even though all of this, I still think I’m the luckiest girl alive. I’m going to focus more on being in the present… I can’t think and obsess about the future. I am here, Ronan is happy, and that is all that matters. We have to make the most of our good days with him because as of now, these are the good days. He is home with us and everyday I have to remember that the days we are together as a family are the best days of my life; no matter what our circumstances are. Ronan, Quinn, and Liam need to have things as normal as possible and that is going to be one of the main things I focus on. I have to bring back the balance and harmony in our lives.

After hounding Phoenix Children’s Hospital for 24 hours, we received Ronan’s CT and Bone scans back. I am just going to touch on this and say that it looks like the chemo is doing what it is supposed to be doing. It appears to be working but we will know much more next week after our second set of scans. This is very good news for Ronan and for our family. Please continue to pray for our little fighter… he has such a long road ahead of him.