Day 2 of Ro’s “Magic Medicine”

Ronan started his second dose of his “magic medicine” today. He did fine. Just a little tired and sick of all the people poking at him. Around 10 I started to get a little queasy to my stomach. Was sick a couple of times and Woody and Mimi came to rescue me so I could go home for a bit. Went home and was sick some more. Thinking it was more of an exhausted thing/being very in tune with Ronan’s body. His pain is mine. I swear the effects of his chemo came out through me. Took a nap for a couple of hours and then got up feeling a little better. My dear friend, Gay, dropped off some of her homemade chicken noodle soup. It saved my life. I ate some of that and felt well enough to go back to the hospital. Uncle Scottie is in town to see Ronan so he drove me to and from the hospital. So thankful for that. I don’t think I could have driven myself. We’ve also been having A/C issues so he dealt  with that all day while I slept. Auntie Karen and Trish stopped by as well. They always cheer Ronan up. Papa Charlie took Liam and Quinn up to Flagstaff for a boys night out. It feels so weird not being up there together like we always are. But I know that Liam and Quinn are having the time of their life getting so much one on one time with their papa. I’m sure they are snuggled in bed reading books and talking about history. That makes me so happy.

Today I got an email from my friend, Susie, and it made me cry. I wanted to share it on here because it reminds me of how lucky I am to have the friends that I do. I met Susie the same time I met Trish, about 6 years ago. The three of us became super close. She moved away a few years ago but that has only made our friendship stronger. She is like the sister I never had. I call her “Spicy Suz,” because she is a pint size little thing full of more fire and sass than anyone I’ve ever met.

Hi mama-

I wanted to email you because I have so many things to say. I read your last two posts (I get an email each time and read everything). I wait for that email on pins and needles because I want to know everything that’s happening. It makes me feel closer to you to read your thoughts even though it  brings me to tears most of the time.

I’m sitting in Napa for vanessa’s bach party and all I can think of is ronan.  I want to come to you so bad so that I can hug you and be there for you the way a friend should. Right now my plan is to visit when we get back from our vacation but it seems so far away.

I know you won’t be able to write me back but I had to send this to let you know how much I love you and how much I’m praying for you. I feel helpless being so far away.

I know ronan is a badass and his body is going to annihilate this cancer. That’s what badass rockstars do…they kick the shit out of anything that comes their way.

I love you and your family with all my heart and I won’t stop thinking about you for one second.

Xoxox

Susie

With Susie holding my hand, even though she is thousands of miles away, she gives me the strength I need to do this. She is a fighter and a pistol just like me. And just like our Baby Ro.

We were moved into a different room tonight due to lots of complaining from my “team.” A.K.A. Woody, Mimi, and Auntie Karen. It stayed empty for a while but a little boy about 10 just moved in.This hospital has outgrown itself so a private room in unheard of. The nurses keep telling me about the new wing that will be finished in 2011 and they will all be private rooms. A lot of good that does me now. We have a new roommate who seems very quiet. Our last one was very loud and kept us up most of the night. Ronan is sleeping peacefully beside me. He is beyond tired today due to all the medicine and his body adjusting to his new way of life. I’m going to curl up with my angel now. Thank you all for your continued love, prayers, support and  going on this long journey with us. We couldn’t do it without you!!!

xoxo



Even when I’m asleep, I dream about his cancer

Ronan fell asleep early tonight and I did too. I’m awake now because I had a terrible nightmare that Ronan had cancer. Except it wasn’t a nightmare at all. It is real. I jumped up from my dream, hoping to be home in my bed with my baby curled up beside me. But instead I am curled up in a hospital bed next to him. In my dream I was holding on to Liam and Quinn’s new teachers hand, Mrs. Martin, and two other women were praying for Ronan in a circle. We were staring at an angel on a wall. I love that even in my dreams, prayers are all around us. I also woke up thinking about a dear friend of mine, Lisa, who knows nothing about Ronan. This lady is like another mom to me and I don’t have her phone number to get a hold of her. When I got a new iPhone, half of my numbers were lost due to me not having them backed up (dummy). I sent her an email to call me. My heart is already breaking thinking about how I am going to tell her. She is like family to us.

Today was a busy day full of more tests, labs, blood work, chemo, and a broviac dressing change which was the worst thing of all I think. The chemo didn’t seem to affect Ronan at all. They start with a very mild dose and the whole thing was done in an hour and a half. Mimi Kay and Papa Charlie sat with me while Ronan had his hearing test done which required anesthesia. Tricia surprised me with a Jamba Juice and a visit and got to sit with me while we waited for Ronan to wake up. It was so nice to have her company. My little M, Marisa, also stopped by just to see my face. She is pregnant and did not want to expose Ronan to any germs so she met me in the hall just so I could see her. It was so nice to rub her beautiful pregnant belly and to hear her funny stories about her daughter, and Ronan’s girlfriend, 3-year-old Gracie. I miss her so much.

Tonight Woody stopped by for a few hours. Ronan was pretty tired but we sat and laughed and loved on him. Woody is being so positive and great. I think my pep talk worked on him because he is in really good spirits, considering what we are going through. We have already decided that Ronan is the mini Lance Armstrong. I’ll bet you Lance was a lot like Ronan at this age. And he beat the shit out of cancer, just like we are going to.

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.  When you think about it, what other choice is there but to hope?  We have two options, medically and emotionally:  give up, or fight like hell.”  ~Lance Armstrong

Hometown Heart

We grew up in the small town of Kelso in the Pacific Northwest. Like with any small town, you can’t wait to “escape” it when you grow up and explore other places. What I don’t think any of us ever realized was how growing up in that small town…our hometown, planted a seed of love and loyalty that none of us knew existed until this moment…a moment when one of our own is in need.

 What are the chances that the three of us would end up in the same city?  What are the chances we would reconnect on Facebook of all places and pick up where we left off 15 years ago, like barely any time had passed?  We’re pretty sure the Big Man had this in his plan all along, and we’re thankful that we could be here supporting The Thompson Family, and representing Hilanders far and wide (sorry…the Blue & Gold of Kelso runs deep!)

 Last night was special for us.  Ronan was showing off his battle scar on his head, munching on snacks, laughing, smiling, and loving on his parents.  We saw Maya with renewed inspiration and a strengthened soul.  We saw Woody with so much confidence and love as he snuggled with Ronan in his bed.  We also saw humor, and we laughed a lot, and it felt really good.  We know this is a tough situation, but to get Maya to laugh and laugh hard was our best work yet!

 After we left, we spent a lot of time talking on the roof of the hospital parking garage in the balmy summer air.  We were kinda hesitant to leave.  We knew with Ronan’s upcoming treatments that visits will dwindle so he can heal, and we weren’t ready to leave our friend quite yet…so we stood out there, looking towards the hospital and sending our good thoughts, love, and prayers their way.

We love you, Thompson Family, and you have all of Kelso & Longview fighting for you!

xo – Olivia & Jennifer

 “To be with us, you have to be good.  To stay with us, you have to be strong.  To beat us, you have to be kidding.  We Are Kelso.”

Chemotherapy

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I will never get used to that word. It will never just roll off my tongue. Today is Ronan’s first treatment and he needs it. He now cries that his legs are hurting and I know the cancer is spreading there. We are up early today because they needed him to pee for me. He is mad and already fighting with me about everything. It took me 15 minutes to talk him into peeing in his little bucket so they can measure it. He has told me he hates me and kicked me out of his bed. I just don’t understand anything anymore. How did this happen? Isn’t this the same child I just spent the entire summer with playing, laughing, and loving? And now we are in a hospital where his entire body is becoming infected with this awful disease. He has to have anesthesia today around noon which also means no eating or drinking. These days are the worst too because he doesn’t understand why he can’t eat or drink when he is hungry. He thinks I am just being mean. I will pray that we get through today quickly and painlessly. I will pray that he will cooperate and not  unhook one of his lines that go to his broviac like he did last night. He is so fast and tricky. It has always been Ronan’s way, or the highway. I really hope today he will give in just a little bit and listen to me. It will make things so much easier.

Laughter really is the best medicine

Today I hung out with Ronan most of the day. We played in bed, walked the halls and then around noon, Mimi, Papa, and Wood came to visit. I was trying to sneak out of the hospital to go home and shower and change clothes, but Ronan was not having any of it. He was really upset to see that I was going to leave him. I finally snuck out around 2 and met up with Woody at home where we had lunch and tried to have a conversation about something other than the fact that our son has cancer. How do you even have a normal conversation anymore? Everything seems so pointless and stupid. While we were home, sitting on the couch I had the T.V. on in the background to try to keep my mind on something else. I’ve never been huge into T.V. but one of my guilty pleasures has been “The Real Housewives of New York City.” That show just happened to be on and I sat and watched it for about 10 minutes. I immediately felt sick to my stomach. I was listening to a bunch of ungrateful, stupid ladies, who don’t have a care in the world; complain and bitch about everything and anything they could possibly think of. How in the world did I possibly sit and watch this show before all of this? I guess it was because I lived in my little bubble where my life was perfect and I didn’t have a care in the world. I didn’t know any better. And maybe that’s how life should be because it was a very nice life. But it is not my life anymore; and it never will be again.

Woody picked the twins up from school for me and I stayed at home and passed out. Hard. I shut all of our shutters, closed the drapes and slept for a solid 2 hours. I woke up and immediately felt guilty for not spending that time with Liam and Quinn. I spent a little time doing normal things with them like talking about school, going over homework, and unpacking their lunches. I had them shower and change clothes and then took them to the hospital to see Ronan. They stayed and played for a good hour which is always good for everybody. I had a lovely visit with a lady named Joanie who I’ve spoken on the phone to several times after finding out Ronan had neuroblastoma. Her son was diagnosed with the same thing when he was Ronan’s age and is now off at the University of Arizona living a happy and healthy life. She was like a breath of fresh air for me. I feel like I’ve known her my entire life. The first time I talked to her was after Ronan’s surgery when we were in the PICU. That was not even a week ago but I swear it feels like a year. I remember our first conversation and I was so scared and I was still trying to grasp what was happening to our family. Tonight after meeting her I instantly felt safe and secure. I know that she is another one of Ronan’s angels and he is going to make it through this.

My two other girlfriends stopped by as well. Jen and Olivia whom I have known since the 8th grade. We were always friends growing but nothing like the friendship I have developed with them in the last year. I know no matter what, those two will always have my back. They will fight for me and my family until the day they die. And I would do the exact same thing for them. They are both such strong, smart, women. I am so lucky to have them in my life. They say laughter is the best medicine and I know whenever those two are around, there is never a shortage of that. I needed to laugh tonight because tomorrow my 3 year old starts chemo. And that is not going to be fun.

Another huge thing that makes me so mad about this is the fact that I do not get to be a mom to my twins for a while. That is so unfair. I was born to be a mom, I take such pride in my kids. My 7 year olds are great examples of how wonderful kids can turn out with the right parenting. And now that is just taken away from me and I have no say at all. That is just cruel and breaks my heart. I find comfort in the fact that I don’t have to worry about them as much because the groundwork has been done. They are very respectful, good, boys. And I know they are in the BEST care in the world with my in-laws and husband around to take care of them. But it still makes me sad because that is MY job. I am now learning the hard way that when it comes down to it, you really have no control over your life. So you’d better be making the BEST of it while you can. You never know if or when you will be hit with something awful like this.

xoxo

A day filled with angels

Finally, a day without any tests on my baby. We got very little sleep last night and Ronan was tired today. We spent most of the day curled up in bed together and then Mimi Kay came to see Ronan so I was able to leave for a while. I went home to a quiet house which was not as pleasant as one would expect. As soon as I walked into my house I felt weak and scared. I tried to keep busy by doing normal things like paying bills, laundry, etc….. but nothing was working. I walked into Ronan’s room and completely fell apart. I sat on his bed and the tears just came pouring out. I screamed into his pillow, beat my head against the wall, and could not stop from crying. I kept thinking, why me, why him, why us?!! After about 20 minutes of this I thought a shower might help. It only made things worse. I turned up the water scolding hot and let myself feel the pain of it burning my skin. I kept thinking, is this how my baby is going to feel going through chemo? Will he burn and hurt like this? I deserve to feel this way, not him. I let the water burn my skin for about 10 minutes and cried my heart out. I kept thinking, I’ve totally failed as a mother; I should have taken him to the doctor 2 months ago when he told me that one day, that his tummy hurt. In 2 days, I’m going to start putting poison in my baby’s body to try to kill this awful disease. This is so unfair and still can’t be real.

When all of this started happening, my friend Lauren kept talking about baby Jack. He is a 3-year-old who has been diagnosed with neuroblastoma as well. Lauren knew of baby Jack from a friend of a friend and passed along his mommy’s number to me. I met Laurie, Zac, and Jack a couple of days ago and they have given me so much hope. Jack is such a beautiful little boy and is responding so well to his treatment. I instantly felt a huge connection to Laurie. It’s just sad that it has to be in this situation because I could tell right away that if these were  normal circumstances, I would absolutely be friends with this girl. After sitting with Laurie for about an hour we learned that Ronan and Jack are only a day apart and they were born in the same hospital. How’s that for luck?? Shitty, if you ask me. Laurie is the one I called today while I was in the middle of my 2 hour breakdown at home. I hate that she has to be the one comforting me because she knows exactly what I’m going through. I wish it could have been it was just because she was my friend; not because she is mom who has been in my shoes.

I’m tired tonight and am going to try to get some rest. I wish I could go on and on about my day today and am sad I am too tired to get into how amazing people have been to us. My amazing friends and family, strangers that have heard our story are dropping off beautiful gifts, cards, and just kind words. I will save that for another day and also the story about the 80-year-old woman who was staring at me today while I was getting my twins’ shaved ice. This woman started a prayer circle in the middle of the store because the owner told her about Ronan and prayers are what she just happens to do morning, noon, and night. Angels are all around us. The people who have been kind enough to share their similar stories with me as well. Taking the time to talk to me and reassure me that everything is going to be o.k. I am finding a lot of peace in a time of complete and utter chaos.

Goodnight my angels.

xoxo

I saw a glimmer of hope tonight…. and I’m running with it.

So last night was rough. After a 2 hour meeting with our oncologist, Dr. Wood; Woody (talk about a sign, Dr. Wood and my husband, Woody:)) and I were completely overwhelmed and had no idea where to turn. We were basically given 2 options for Ronan’s treatments and had only heard the opinions of our one oncologist here (who is amazing) and his “team.” Around 9:30 p.m. we called in our own special team to consult with. My twins’ godmother, Karen Kotalik,(who i would trust with my life) her brilliant husband, E.J.,my dearest friend and Ronan’s godmother, Trish, her amazing boyfriend, Max and last but not least, my other BFF, Lauren, via telephone… who has been researching morning, noon, and night for me. We sat in the cafeteria for hours and hashed out numbers, results, treatments, side effects, doctors, hospitals, resources, etc…. I felt lost, scared and exhausted. It also may have had a little something to do with the fact that I’ve had about 5 hours of sleep in the past few days. Our doctor basically wanted an answer in 24 hours. I freaked. 24 hours to decided the fate of my precious little guy. How in the world did they expect us to come to such a huge decision so quickly? It seemed so unfair and cruel. But unfortunately, time is not on our side. And decisions have to be made sooner rather than later. We compiled a list of the people we needed to get in touch with for the next day. The best of the best doctors in neuroblastoma, hospitals, people who have been through this, etc…. We spent all of today making phone calls and getting Ronan’s information to all the right people. I was amazed at the positive responses we got from doctors all over who were willing to take their time to talk with us. After a morning spent researching, I went home and met up with Woody and we were both in agreement on what to do. The way that the pieces fell together was almost like a little bit of  magic/art/science/ and love. I’m not going to go into details about what road we are taking on here. That would take way too long and the details are very difficult to explain as a mom. I can tell you that after meeting with Dr. Wood again tonight, that he is in agreement with us that we have chosen the right path. Last night when we met with him Woody straight asked him, “If we do this treatment, is this what you would do for your son? ” He wouldn’t give him us an answer. Tonight with the different way we’ve chosen to go, Woody asked him the same question. His response was, “absolutely.” I know in my mind, body and soul that this is the right path for us to take. This is our best shot. Dr. Wood also said something tonight that will remind me that Ronan is no ordinary boy.  He told us out of all his patients he’s seen over the years, that he’s never seen anyone with the disease that Ronan has, act the way that Ronan is acting. Basically, Ronan should be acting like he is very, very, sick. This child is acting the complete opposite of that. If it weren’t for his black eye, incision across his head, the broviac catheter in his chest, you would never know that he is fighting for his life. This just proves what I’ve known all along about my beautiful little boy. He is a fighter, he is strong, and he is unlike anyone on this earth. My friend Lauren told me tonight after spending sometime with us that she physically felt something protecting us as soon as she walked into our hospital room. I couldn’t agree more. It’s almost like Ronan has his own private force field surrounding him at all times. It is a beautiful thing to see and feel. There is more to this than just this awful disease. Something bigger is out there and there is a reason why this is happening to us.

Thank you for following my blog and loving Ronan the way you do. Even the people who don’t know us at all. I am trying my best to read all of your comments and beautiful words. They are so comforting to me, especially when I am waiting around for Ronan to come out of anesthesia or back from test results. Mama needs to snuggle up with her little angel now. Goodnight to all my sweet angels out there. I will never be able to thank you enough for all you are doing. I am going to save that job for my Ronan Sean.

xoxo

Ronan with one of his angels, our Mimi Kay

My first true love

So we met with the doctor last night and while I was holding Woody’s hand I was trying to focus on all the information being thrown our way. My mind kept wandering back to Woody and I couldn’t even look at the doctor anymore, it was Woody’s face that I was staring at. I kept thinking, why him? How in the world could this happen to him? And I’m not taking about Ronan… I’m talking about my Woo. The most amazing man put on this planet and I’m not exaggerating. Anybody that knows my husband, knows how unbelievably rare and special he is. I am so pissed at myself that this has to happen to him. I know it’s not my fault and it’s nothing I did but i am still so mad and sad. My heart aches for him every second of the day. He is the last person that deserves this kind of pain. My dearest friend, Trish, always tells me he is one in a billion. My mom wants to clone him. I met this man when I was 21 and have never doubted in my mind that he was my other half. He is 100% too good to be true; but proves himself everyday to me. So, is this what our fate was meant to be all along? To face something so horrendous together because no matter what, we will survive. Together?Because we are strong enough as a team that we can beat this? I know one of Woody’s fears is that this is going to rip us apart. Not possible. No matter what, we are going to come out of this stronger. I know that for a FACT.

What day is it????

The days are so blurry I can’t even keep track anymore. So much has happened today, but I am only going to talk about the love I saw between 3 little boys. The twins came to visit!! We finally decided that it was ok because Ronan is looking much better. I missed the reunion because Wood and I were in talking with the doctor. From what Mimi Kay says, Ronan lit up like she’s never seen before. The 3 boys were so happy to be together you would have thought they were at Disneyland, not in a hospital.

It broke my heart when they had to leave. As they were saying goodbye, Ronan got so sad. I looked down and saw him trying to be so brave and tough, but his little lip started to quiver as he fought back the tears. Poor baby.

I could go on and on but my eyes are blurry and I am exhausted. Today was good for my Ronan’s spirit and soul. I physically felt the love that surrounds us and I know, no matter what, we are going to make it through this. xoxo

Love to all of our beautiful angels out there. Nighty night.

” I love you mama. I love you sooo much.”

Those are this words I woke up to around 4 a.m. this morning. Ronan had wrapped his arms around my neck and was telling me he loves me. That’s the baby I know. He’s still in there fighting away with his heart full of love.