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:)
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.
Starting up a team in AZ. Please let me know if you would like to run the half or full marathon for Team Rockstar Ronan!!
I’ve created a team for 2011 P.F. Chang’s Rock ‘n’ Roll Arizona called Rockstar Ronan, and it’s now open for registration. You can join the team here:
You can also find more information at the event website.http://www.active.com/marathon/phoenix-az/pf-changs-rock-n-roll-arizona-2011-zs406
if you want to register for the Rockstar Ronan team, please select the Get Fit Challenge Half Marathon. Then sign up under Rockstar Ronan!! Let’s pound the pavement for Ro!!
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.
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!
Ronan had a great day. We went into the clinic to have his blood levels checked to make sure they are high enough to start the harvest of the stem cells tomorrow. They are through the roof so we got the green light! I am so happy we are staying on track with things and Ronan is such a little Rockstar that he is busting right though all this cancer crap. While we were at the clinic, I quietly asked our nurse Sharon a question that has been on my mind all weekend…. eating away at me. I asked her if it was common to never see your doctor. O.K…. not never, I’ve met the man one time to be exact. This is just not sitting well with me. I can always count on Sharon to be honest with me and I got my answer. From that point on, I knew what I had to do but I wanted to make sure Woody was on board with me. I stepped out into the hall and made a quick phone call to him. I then walked back into the room and told Sharon and Marsha, our social worker, that we would like to request a change of doctors. In the blink of an eye, they made it happen. Ronan’s primary doctor, who will be taking over his case is Dr. Eshun. I’ve seen Dr. Eshun a dozen times… he is always checking in on us to say hello or to quickly look over Ronan. To me, that means the world. As a mother, I know I have to be my son’s biggest advocate and I have to feel like he isn’t just another number. He is a child, my child… not some science project. I am feeling pretty out of control about everything to do with Ronan’s situation. This gave me a feeling of control back and tonight, I am feeling much better about things. I need to know that we are in the right hands at PCH. If we are going to stay here, we have to be happy with how everything is going. Otherwise, they are going to hear about it. We are not the type of family to sit back quietly and not express the way we are feeling.
We have a very early and long day tomorrow. We have to be down at PCH by 7:30 and will be there until around 4:00 in the evening. I am hoping to get some sleep tonight without the terrible nightmares. Everyone is already asleep in our house… guess I will try to get some shut eye too. Tonight, Woody and I had some time alone. We cuddled on the couch together and watched Bill Maher. It was nice to just be with him. I am going to leave you with one of my favorite song lyrics tonight. Anyone who knows us knows that we are family that is crazy about music. I heard one of my favorite songs on the radio today… it’s by Sheryl Crow. It reminded me how lucky I am to be married to Woody.
“When I’ve shown you that I just don’t care.
When I’m throwing punches in the air.
When I’m broken down and I can’t stand.
Will you be man enough to be my man?”
– Sheryl Crow, Strong Enough
Woody is so strong. I promise I will stay strong too… for the sake of my amazing husband. I won’t let him down.
When going through something like this I’ve learned that at times you will feel crazy. And at times, people will make you feel like you are going crazy… and tell you things like you need medication. But somehow… if you are strong enough, you pull it all together… get all the little voices out of your head, refocus, and find your way back. It can take something as simple as taking a drive, screaming your lungs out and just taking 30 minutes to be alone, to bring your strength and sanity back. Game on, cancer. You have pushed me down but I will not stop fighting back.
I have also learned that I can no longer take things day by day. My world now consists of hour by hour. One foot in front of the other. Apparently, there is a certain way you are supposed to act and behave when your child has cancer. I have not been following standard protocol because I am only human. Until you have walked in the shoes of a mother who’s child is sick, you cannot pass judgement or tell them what is right or wrong. I know I am making mistakes, but they are my mistakes to make. As of right now, I am thankful I am able to pull myself out of bed in the morning and take care of my baby. That right there is a victory to me in it’s own right.
I said from the beginning of all of this that this blog was going to get ugly. I love the days that I am happy, positive and full of light. Unfortunately, this can’t always be the case. This is my blog… my honest blog and a lot of it is going to be the way that I am feeling. I will of course update you on how Ronan is feeling, his progress, his victories…. but there is going to be some other things in here that are not so fun to read. If you are not down for that…. the bus stops here. This is my outlet and my truth and I won’t be shut down.
Now that I’ve gotten that off my chest I can update you on how Ronan is doing. To say he is doing amazingly well is an understatement. He is so full of spunk and energy it’s like we have 3 Ronan’s running around the house. He enjoyed his weekend playing with his Nana and brothers. There was a lot of Nerf gun shooting going on in our house. Tomorrow we will check his blood levels to see if we are ready to start the harvest of his stem cells on Tuesday. If that is the case, then we will spend 1 or 4 days down at the hospital depending on how easily the harvest goes. Thankfully, the process is very simple for being so complex. They take the stem cells out of his broviac so it is just a matter of how quickly the collection goes. It still makes for a long day so I will have to bring lots of things to keep our little guy busy; in bed. Lots of books, coloring, and movie watching. Maybe I’ll bring one of his Nerf guns so he can shoot the nurses;)
My mom leaves tomorrow after being here for a week. I will have to say that I wish I could have been a little stronger and sane for her visit, but I cracked. I spent the whole week feeling like I was drowning and suffocating. I can’t help the way I am feeling or when my emotions take over. I’m sorry for making my mom worry so much about me because I am going to be fine. I took out a lot of my anger on her because she is my mom and I am angry about a lot of things. So, I apologize for that… nobody deserves to suffer my wrath.
I wanted to take a minute to say a huge thank you to all my Kelso Kids who supported Ronan and walked the Relay for Life for him on Saturday. Liv and Jen…. you two are my hearts. I can’t thank you enough for rallying together to making Team Ronan happen. And Olivia, your speech was beautiful. I am so proud to have you up there as my friend, talking about my baby. He is a fighter and in a couple of years we will be there walking it with you; with Ronan as a survivor.
Goodnight to all of our angels out there. Please continue to pray and send your strength our way.
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.