Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms

My dreams are my reality

Hoping for a quiet weekend, at home with a whole lot of nothing going on. As of now, our plan is that Woody and I will be flying out to Philidelphia on Tuesday with Ronan. We will meet with Dr. Mosse at Chop and we are talking about making the drive to New York to meet with Dr. Kusher once again. We are going into Chop with an open mind and are hoping they can give us some answers as to why we should choose them with the life of our son. I have no doubt they are qualified, but as I have said in the past, there is something about Dr. Kushner that I trust wholeheartedly. I feel the same way about him that I feel about Dr. Adams. Complete trust and as if they are the best at what they do. Maybe I will get this feeling from Dr. Mosse as well. It is worth a shot and it is an option we have to explore. Ronan seems to still be feeling well and his ANC counts were 1600 today which is great news. Hopefully they will continue to stay this high so flying next week won’t be a problem. We will go to the clinic on Monday to have his levels checked again and I am pretty sure they will end up giving him a transfusion of blood for the trip. Praying that he stays well so we can get him out to Philly and New York and find the answers we are looking for.

I am so tired tonight. Ronan is asleep next to me and I am not going to have any trouble curling up beside him and falling asleep. I have been sleeping better lately, but still having my very real dreams. It is so funny how my dreams and reality are pretty much the same now. My dreams at night are all about what we are going through and the choices we are going to have to make. I’ve said before, I never get a break from what we are going through…. not even in my sleep. Maybe that is why I’m so exhausted during the day. No matter how hard I try, I cannot escape even for a second what we are up against. I’m o.k. with this…. it just means I know my entire body, spirit and mind are fighting 24 hours a day for Ronan. I wouldn’t have it any other way. I am his mama bear, I will fight for the rest of my life for him.

That is all for tonight. Hope you all have a beautiful weekend. G’night to all of my loves out there; you know who you are. I love you all so much.

xoxo

Loveliness

Dear Cancer,

I will never love you. You will never be my friend. You have taken my beautiful life and ripped it into shreds. I have watched you hurt my child over and over again. You have taken his beautiful strong body and tried to weaken it, his bright blue eyes and tried to dim them, his fierce spirit and tried to kill it. I have watched the tears he has cried, the pain he has felt, and the sadness you have brought. I have watched the way you have taken away our time together as a family, how you have tried to break us, how you have tried to rip us apart.

Do you see me? Do you see the pain in my eyes, the thousands of tears I have cried, the fear on my face? Do you know what it is like to have your worst nightmare come true and to not have any control over the outcome? What it’s like to watch the people around you be scared and feel your pain too? To watch them as they either choose to stay in your life or run the other way? The lessons you are teaching me are insightful indeed, but I would rather have learned them by being educated on Childhood Cancer. Not because you were going to put my baby through this.

Now, I sit and wait and fight. I have no choice but to take the lessons along the way with dignity and grace. To find the beauty in the ugliest days. You want to break me, but you won’t. You want to take my child, but you can’t. I will stop at nothing to destroy you and all you have done to our family. I will cry my tears in the shower and you may knock me down, but I will get back up.  The love I have for my son will get him through this; that I can guarantee. Someday, I will show you whose boss. Someday people will start paying attention and cures will be found. Until that day, I swear to you that I will stop at nothing to get rid of you forever.

I feel sad for you because you must not know what it is like to have a mother’s love. A love so deep and pure, that it can conquer anything. A mother’s love will get you through the toughest storms and keep you warm the entire time. A bond so strong, that it can survive the toughest waters. Each time I kiss the top of my baby’s bald head, I think of you and what you have done. Don’t you know that this child is half of me? Our bond is so unbreakable that it is if we are one. So, when you decided to pick him, you picked me as well. And I will stop at nothing to protect him and get him well.

So Cancer… I think it’s time for you to go. You are not welcome here and I hope you are prepared to lose this fight. We are much too strong of a team for you to destroy. You have made your mess and we will happily clean it up. When all is said and done, and you are gone forever we will go back to living our life the way it was before. Except this time, nothing will be taken for granted and the simplest things will now be the most beautiful. We will live everyday knowing how lucky we are to have the most 3 most important things: Love, Health, and Thankfulness. Life will once again be carefree and joyful. And although our wounds are deep; they will heal over time. We will get our life back as a family, before you came here like a Tornado and turned our lives upside down. Each day that passes by, is a day closer to getting rid of you forever. You have burdened our lives only to bring us more beauty than we ever knew existed. I really wish I could say thank you for all of this but I cannot. I am going to say a big Fuck you to you instead. SO FUCK YOU CANCER!!!!!!!!!!! Have a really beautiful night. And no sweet dreams to you.

Sincerely not your biggest fan,

Maya M. Thompson

Rockstar Ronan’s Mom

A small glimpse of the amazingness of Fernanda

This is her latest email to try to get Oprah‘s attention. Can you see why I am in LOVE with this woman?? She is amazingly smart and witty. Love this email; it cracked me up and is so to the point and true. How can these people not listen??

WHY OPRAH AND STEVE JOBS SHOULD GO OUT ON A DATE

Dear Gayle, I am writing to you because I think you should set up Oprah and Steve Jobs on a date. And only BFF’s can make that happen. My name is Fernanda Borletti, mom of 5, all under 7. My life is easy and blessed. But my dear friend Maya’s life is not. Her beautiful 3-year-old son, Ronan, was diagnosed with Stage IV Neuroblastoma in August 2010. Since then she and Woody have fought the toughest battle of their life, and portrayed it beautifully in her blog: www.rockstarronan.com. All you have to do is spend 5 minutes reading it to feel that something has got to be done.

Which brings me back to Oprah and Steve getting together. I go to bed at night thinking of all the things they could do. Shine a light on childhood cancer by doing a show, honoring the courage of mothers fighting for their children, getting iPads for all the kids going into Bone Marrow Transplants, and forced to spend weeks in isolation. I mean the options are endless. And I know they would do it.

This morning I decided that all I want is for them to go out on a date  and let them, together, do what what they are know for best: just surprise us.

Can you help me?

With much admiration and gratitude,

Fernanda Borletti

Because no baby should have go through this….. There are no words for this picture and how I felt on this day.

San Francisco baby steps

Sitting on our plane back to Phoenix as I write this. This is something straight out of a movie. Yes, my baby has cancer. He is sound asleep beside me. As Woody and I watched him sleep, we held hands and talked quietly about all the decisions we have to make. I looked up at Woody and said, “He cannot die.” Woody looked at me and told me, “He’s not going to die, I won’t let that happen.” I then made him promise me. He promised as he squeezed my hand. Woody has yet to let me down in my life and I know he’s not going to start now. It is so unfair that my husband has to carry this huge weight around with him of something he has no control over. This ugly monster, Neuroblastoma, is trying to ruin our lives. But we won’t let it. It won’t win.

I left Phoenix with fear in my heart and tears in my eyes. Woody was trying so hard to make this a fun trip for us and I was trying not to get annoyed at him for keeping things light and cheerful. I tried my hardest to go fight him on having fun. Eventually, he won and our 24 hour trip turned into a really good time. We arrived to San Fran, grabbed our rental car, and headed to our hotel. We checked in around 8:30 p.m. and Woody headed out to one of his favorite record shops, which we happened to be staying right next to. He was like a little boy in a candy store. I stayed back at the hotel and Ro and I put on our P.J.’s and waited for New York Miss Macy to arrive. Ronan was so cute and excited. He kept staring out the window of our hotel, watching for her arrival. Soon, there was a knock at the door and Ro rushed to open it. There was our beautiful Mace, with her bright eyes shining and hugs all around. She came, once again with the best treats for Ronan. Including a bag full of candy, and Ronan’s favorite; candy corn! We all 3 cuddled up on our bed, played, laughed and talked. Woody came back with a bag full of old 45 records for his collection and some new C.D.’s. Macy was very excited about his findings and they started comparing favorite bands, concerts, etc….. Such a nice, normal night. For once, it was almost like the cancer cloud wasn’t hanging over our head. I notice this happens a lot when Macy is around. She brings such a positive light to our world… One that I don’t see very often anymore. She has the spirit of a child but the soul of someone wise beyond her years. When I am around Macy, I find all of our troubles disappear for the time being. Such a gift to me. Macy ended up going home around midnight and we all 3 curled up in bed and slept until 8 the next morning. One of my favorite things about Ronan is how he wakes up. It’s the same way everyday. It’s always him, touching my face, smiling at me, and saying, “Good Morning, Mom!” It is so simple and pure and he is always so happy. It’s as if he knows another day of life is here and he understands how precious each day on this earth really is. He is always so excited to wake up and see what the day has in store for him. Breaks my heart that most of his days are filled with hospital visits and doctors appointments. This doesn’t dampen his spirit though…. he knows how lucky he is to be loved as much as he is and surrounded by so many beautiful souls.

After we got up and ready this morning, Ro and I headed downstairs for breakfast. Macy soon joined us while Woody worked. As I was telling Macy about our adventure for the day, it occurred to me that she must come with us. We had a tour set up at Lucas Studios thanks to the ever so gracious, Lynne. Our tour guide, Chris, was expecting us at 11. Macy and I both looked at each other and knew instantly that she should absolutely come with us. I called Chris to make sure this was o.k. and he was so kind to say it was. The next thing I knew, we had totally hijacked Macy for the day and we were off and running to Lucas Studios. It was amazing! The studios are nuzzled in the middle of the city, but hidden in what I swear is its own little fortress. The views were to die for. We took our time strolling around outside, enjoying the sunshine and ocean air. We met Chris and he took us around for over an hour and a half. Ronan was in heaven, but I think out of all of us Woody enjoyed it the most just because he appreciated all the history behind it. Ro had a blast and was even left some gifts by Captain Rex himself. He was over the moon about his new light saber and toys. He finished off the day by chasing us all around and showing us his super cool Jedi moves. He had us all in stitches. Thank you so much, Lynne for this day. It will be one we will never forget.

After we left Lucas Studios it was time to head to UCSF to meet with Dr. Matthay. We dropped Macy off at her car and said our goodbyes. She may live in San Francisco now, but she will always be New York Miss Macy to me. I am so happy we were able to spend the time with her that we did. It meant the world to all of us and we can’t wait to go back for visits and to have her closer to AZ to visit us. Spirit Hoodies will reunite ;)

On our drive over to UCSF, I could tell Woody was as nervous as I was. We arrived right on time and sat in the waiting room for our consult. Dr. Matthay soon came out to greet us and we were taken back to a room to talk. I felt very comfortable with her instantly and I loved that when she went to examine Ronan, he went right to her as she scooped him up in her arms and set him on the table. We went over his history and his scans. She told us she did not want to give us a formal recommendation as far as his treatment goes because she wanted to look over his things a little more thoroughly. She is meeting with her board tomorrow and Ronan will be the topic of discussion and from there she should be able to tell us what she thinks our best options are. We talked today about what she thinks she would want to do and I fully believe in what she is saying, as she has the statistics and data to back it up. This woman means business. She eats, breathes, and lives everything Neuroblastoma. It is her life and I have no doubt she knows what she is doing. The question is, is it the right path for our son? We are still not sure, but are very open to listening to what she has to say. So, did I find the clarity I was looking for on this trip? Not really. I do know that our next step will be to go out to CHOP in Philadelphia to get their opinion as well. We are taking baby steps with this decision. Right now, we are still gathering all of our information and feeling things out. I am glad we went to San Francisco and we are not closing that door…. but I’m not getting the gut feeling I was looking for. That’s o.k. though because I feel as if San Francisco will lead us to where we need to go next. We would like to get out to Philly A.S.A.P. and then meet with Dr. Kusher at Sloan once again. The bottom line is, nothing will be decided until we do Ronan’s next set of scans. We just need to make sure we are fully prepared for our decision when the time comes depending on what his scan results show.

Yowzer. That was a lot of writing tonight. So tired. Beyond words, but I had so much to say. Love you all. Thank you to all of you for keeping up with us. Thank you to all of our beautiful friends for helping us through this. Thank you to my in-laws for taking such great care of my precious twins. We are so lucky, thankful, and blessed to have you all. Sweet dreams my dears.

Ro baby takes San Francisco

We are leaving this evening for San Francisco. Praying for a safe flight of course but most of all praying for a little bit of clarity. I hope by looking into Dr. Matthay’s eyes, that I will have a better feeling about everything. I am hoping she can give us some answers and guidance. I am hoping that Woody and I will walk away from this trip feeling a little more prepared for what we are up against. As of now, all we can do is gather all of the data possible and let our intuition guide us. I hope to get a feeling of what San Francisco can offer us.

Today, I met with my friend, Mr. Sparkly eyes. I put on my bravest face but he knew just by looking at me that I was a wreck. We sat for about 20 minutes and had it out. He asked me why I was second guessing myself… told me to knock it off and just to continue to do what we are doing. He is right, I have never been one to second guess my choices in life and I cannot start now. I listened as he pounded into my head once again, how strong I am, how strong Ronan is and how when the decision is made, it will be the right one. It was just the little pep talk I needed. I felt stronger after having left him and I know he is right in everything he is saying. I met Fernanda for a bite to eat at Chelsea’s but it was really just another little pow wow session that I needed to have. I am so lucky to be surround with such bright and beautiful people. I wish I could put Fernanda in my back pocket and take her with us. We sat and talked about everything from Ro’s path, which is uncertain as of now, to how we are going to get Oprah to listen to us and do a show on Childhood Cancer. Fernanda has been emailing Oprah every single day and has made it her personal mission to make Oprah listen. Could you imagine the good things that would come of this if she did?? The awareness that would be raised?? I don’t think it’s asking too much of her to change an episode of her show for something so important. I just pray that she hears all of the people asking this of her and chooses to do the right thing. She has the power to make this happen, if she would only listen. Her voice could change childhood cancer forever. Does she realize this?? I am not giving up on this Oprah thing, and if anyone can make it happen, it’s Fernanda. Thank you, F…. for lunch today and for the spirit of the person you embody. I swear to god you have wings. I have meaning to throw this quote in for a while. My friend, Melissa DiFilippo, who’s little girl is in Liam and Quinn’s first grade class sent me a message the other day on FB. It said, “When I grow up I want to be Fernanda.” It makes me laugh out loud and brings a smile to my face every time I think about it. I couldn’t agree more.

Alright world…. here we go. Off to San Fran and it’s time to take care of business. See you sooooooon New York Miss Macy!!!

xoxo

Magic Medicine, Day 4 and Day 5…. Round 7

What a beautiful, rainy day. My favorite kind of days. Being from the Pacific Northwest, I miss days like this so much. Ronan woke up happy as a clam, excited to know he was going home later this afternoon. We played in his bed for a little bit and then we went down to the cafeteria so I could get him his slurpee mix to put his oral chemo in. We came back to our room and talked to the nurse about discharge time and specific instructions as far as being back at the clinic tomorrow for the last day of cycle 7. Dr. Maze came up and sat with us for a while, played with Ronan, and we talked about the upcoming trips we are taking with Ronan to visit a couple of other hospitals. I had no idea, but his brother is the head of Anesthesiology at UCSF where we will be visiting on Wednesday. He sent him a message to let him know we were coming to the hospital to meet with Dr. Matthay. Ronan is excited to go to San Francisco and we have turned it into something really positive and exciting. I contacted somebody we were put in touch with whom works for Lucas Films. Lynne, has so graciously set up lunch on Wednesday over at the studios of Lucas Films and a little tour for Ronan. He cannot stop talking about going to visit Star Wars and New York Miss Macy, who just moved to San Francisco. It is going to be a short, productive trip. I am of course, over the moon about getting to see my love, Mace :)

I started this post yesterday but didn’t finish it last night due to falling asleep at 9:00 and sleeping all night long. It’s a miracle! I have not done that since before Ronan was diagnosed! My dreams were not even that horrific. I, of course, dreamt about Ronan and his cancer…. but my dreams were more peaceful than they have been in a long time. We went home yesterday around 3:30 and we are now back at the clinic for Ronan’s last day of this round of chemo. Liam and Quinn have the day off from school and Quinny is here with us while Liam is with Mimi and Papa. We will be finished here around 3 and Quinn is being such a good little helper. It was fun to introduce him to all of the people  here who are such a part of our lives now. He hears Ronan talk about them all day long and I think it was good for Quinn to put the faces that go with all the names. It was also good for Quinn to see what we do on a day-to-day basis while we are in the clinic. He likes to know what is going on with Ronan. Ronan is of course over the moon to spend the day with one of his brothers.

Fernanda came by the clinic and dropped me off a coffee (which I proceeded to knock over and spill) She called that, good luck. I of course chopped it up to nerves. I’m scattered today; nervous about meeting with the doctor in San Francisco. Dr. Eshun already told me that he spoke with Dr. Matthay and she is going to suggest we do MIBG treatment as soon as possible. I already knew this. Everybody is going to be biased in the way they want to treat Ronan’s cancer. But nobody really knows the correct answer. This is beyond fucked up to me. The fact that Woody and I are going to have to make a choice in regards to Ronan’s life and part of it is going to have to be based on a leap of faith. No parent should ever have to be put in that situation. I’m not one to get political one here because that would stir up too much shit, but HELLLLLLLOOOOO WHITEHOUSE!!!!!!! With all the money that you are spending on the world….. why don’t you throw a WHOLE bunch of it at Childhood Cancer so we can actually find a cure for this horrific disease that is killing MILLIONS OF CHILDREN?!?!?!?!?!?! They are our future and with the lack of funding, you are throwing away the lives of amazing children who would make this world a much better place.

I came across a quote by Mark Twain today and it made me smile. “There are three kinds of lies: lies, damn lies, and statistics.” I said at the beginning of all of this I was going to stop listening to the statistics for Ronan. I stand by what I said. He is not a statistic, he is my child. Many people do not want to associate cancer with children. It is just an unthinkable horror. It’s easy to dismiss the idea by saying, “This will never happen to my child.” Unfortunately, it happens more often than we’d like to believe. According to the National Childhood Cancer Foundation, one in every four elementary schools has a child with cancer. While many children are cured, there are still many children who will die.

When you lose your parents you are an orphan. When you lose your spouse you are a widow(er). There is no name for a parent who loses their child because it is just too unspeakable.

Why is the happening to my perfect little boy? Because there was never a boy born who is more beautiful in this world; so now he has to pay the price? I want an answer for something I will probably never know and it’s not fair. I want someone to be mad at and someone to blame, but that person does not exist. If I can’t have something tangible to blame, I want a cure, god damn it! I don’t want to have to put the life of my child on the line and trust my instinct in choosing his path. This is beyond unfair. It is sick, inhuman, and cruel. He does not deserves any of this! NO CHILD DOES! For all of you out there who are compassionate human beings; and I know you are because you continue to read this blog and pray for Ronan….. I dare you to come and spend the day at a hospital full of kids who have cancer. If your life is not affected, if you can walk away from all of this and never look back, you are reading the wrong blog. For those of you who are already doing something, big or small….thank you. The time is now to make a difference and your wake up call is here. It’s time to do something, whether it be to volunteer, to make a sick kid smile, or to help in raising awareness in any way possible. I wish I wasn’t getting my wake up call in life because my child has cancer. I wish I had someone telling me to do something. I would have listened if I had known this world existed. I lived a blind life full of a false sense that everything was perfect in the world, because my world was perfect. WHAT A BIG, FAT, LIE.

An innocently good day turned into a not so good night. Let’s see….. I threw up the one little thing I tried to eat for dinner, went to try to get gas in my car (had to leave due to not being able to get the gas to pump due to my head spinning) and then went to Target were I proceeded to abandon my cart due to almost having a severe panic attack in the store. Fernanda called just as I was walking out and I started bawling to her. She was like “What at the fuck are you doing trying to get gas for your car?” “That’s what we are all here for!” You know you are in trouble when getting gas seems overwhelming. In the mist of my bawling in the car before I left the parking lot I texted my Mr. Sparky eyes whom is always telling me that I am doing a great job at handling everything and I need to stop being so hard on myself. I said to him, “People that are doing o.k. do not have to leave in the middle of shopping at Target because they cannot focus on what they need to get. I am not o.k. and I cannot believe I have to make a decision in regards to my son’s life when nobody knows the right answer.” 2 minutes later, he called and basically talked me down from the ledge and sat on the phone and let me cry. He reassured me as he always does that we are doing everything right in our power and we are going to make the best decision for Ronan. He then told me how I am alright, I had just had a shitty day and tomorrow will be better. He also told me that anything I needed at Target, I really didn’t need anyway. He calmed me down as he always does with his wisdom and words. After talking to him, I was able to go and get gas for my car without any problems.

I came home to a hectic house of boys’ gone wild. My 3 little guys are so happy to be together, that it is hard to get them calmed down for bedtime. Lots of laughing and playing just as it should be.  San Francisco tomorrow. One more piece of the puzzle to put into place. Will it fit or not?? Only time will tell.

G’nite my loves. Thank you to Fernanda, Stacy, and Mr. Sparkly Eyes for being there for me tonight. Your words helped me through the night. I love you.

xoxo


Magic Medicine…. Day 3, Round 7

Ronan and I started off the morning bright and early. He was up around 7 and was asking to go to breakfast. I needed an excuse to go and get him his Slurpee anyway to mix his chemo in, so we left the house and went over to one of my favorite breakfast spots, Taylor’s, for some grub. I ordered oatmeal, and Ronan asked for pancakes and scrambled eggs. He ate almost all of his breakfast, along with half of my oatmeal. He was so happy to be out and about and was loving how windy and stormy it was today. After breakfast we stopped at 7-11 and then went home. Woody and the big boys’ had already left for baseball and I spent the next hour getting us ready for our hospital stay. Sharon called around 10 and said they were ready for Ronan so to bring him in. Ronan was not happy about having to pack up and leave and kept saying how much he was going to miss his brothers. I told him it was only for a couple of nights and we would be back home before he knew it. Once we arrived to PCH he was in a much better mood and was so excited to hear Sharon was in the hospital working today. We only really ever get to see her at the clinic so having her on the 2nd floor today was a treat. As soon as he got off the elevator, Sharon was walking down the hall and saw us coming. Ronan ran up to her and she scooped him up in his arms and gave lots of kisses to her “boyfriend” as she calls him. He was tickled to death. Arica was also working today so it was a double surprise for Ro! He was in heaven and was in an extra happy and silly mood.

Woody came by to bring us lunch and soon after that we finally got the chemo started. It only took a few hours and then our nurse was able to unhook Ronan from his tubes so he could run free for the rest of the evening. With this chemo they only give him 2 hours of hydration afterwords so he doesn’t have to be attached to the pole 24/7. It really makes such a difference in his spirits if he is “hooked up” as he calls it, or not. We had lots of visitors today. My friend, Lisa, whom I have not seen in forever came by for about an hour. Ronan fell asleep while she was here and we sat and talked quietly. She tried to get me to take a nap with him but my mind wouldn’t let me relax even though I am mentally beat. Niki came by to give me a much-needed hug and Ronan let her stay for about 20 minutes before he kicked her out. Hey, it was better than nothing. Jen and Olivia came by late this evening and Ronan was still wide awake. He cracked them up with his little voice and bossy words. “Gilllllyyy….” “Sorry.” LOL. So funny. He was totally showing off for them with his sassiness. The girls stayed for about 45 minutes and then Mr. Boss man said it was time for them to go. He wanted me all to himself and I think his exact words were something like, “Just you and me, mom.” He was being adorably funny tonight. After the girls left, he insisted that we go down to the cafeteria because he was hungry. Off he went running out the door to our room and out to the elevator. He kept saying he was going to beat me because he is so fast. Geez! That kid had a ton of energy tonight and ran all the way to the new cafeteria. We were laughing the entire way. The hospital was really empty and quiet, but I’m pretty sure everyone could hear our giggles. Ronan has such a way of making the worst situations, beautiful and fun. As long as he is happy, and as long as we are together, you could put us anywhere and we would have a good time. I loved watching my child running around and being care free. This has been one of the best hospital nights that we have ever had.

The doctor on call said that we can go home tomorrow after Ro finishes his chemo and then just do the last day in the clinic on Monday. Yay for that! Only one night in the hospital!! Ronan is going to be so excited to be able to see Liam and Quinn tomorrow. The amount of love he has for those boys’ amazes me everyday.

Today, I had so many people send me pictures of all the amazing rainbows we had in Phoenix. It meant so much to me as Ronan and I watched the rain from the inside of our hospital room. Thank you all for the beautiful pics and for thinking of us. And Bethany, I too have such a peaceful feeling; glad you are feeling the same. I love you.

G’night all of you. Sweetest dreams and we hope you are having a lovely weekend.

xoxo

Magic Medicine…. Day 2, Round 7

We are at the clinic while Ronan does his second day of his new chemo. This morning we did his oral dose at the house before we left. Mimi Kay stopped and picked up a Slurpee and I put on my rubber gloves, opened his chemo pill, and dumped the powder into a little cup of Slurpee so he wouldn’t taste it. He hesitated a bit but then downed it like a champ. We arrived to the clinic and they got things moving fairly quickly. Bethany and Fernanda both came and sat with us for a few hours. It was so nice to have their company. Makes the time pass more quickly. We have a couple of hours left of hydration and then we will be set to go home for the day. Ronan is more than ready for that and has asked for the past hour when we can leave.

Today, my stomach is in knots. I know in my heart of hearts that we are taking a different path for a reason…. the only reason which is because we are going to get Ronan rid of this disease FOREVER. It’s the not knowing which path we are going to take that is hard; the anticipation of how this chemo will work is eating me alive. I know I can’t worry too much about the future because we just have to take it day by day. We have a lot of decisions to make and I am so thankful to be surround by the smartest people in the world to help us make these decisions. My head hurts, my stomach hurts, I can’t stop crying and I’m tired and just want to fast forward time until Ronan is back to being cancer free. Once again, my crazy intuition tells me that he is going to be fine and grow up to live to be 100. I know my intuition and it is always right. I also know that it is going to help us in making the right choice for Ronan. I just have to trust in it and trust in myself.

I can’t stop crying today and it is over everything from how blessed I am to have the amazing support I do, to feeling sorry for myself, my family, and my son. It’s been a roller coaster of an emotional day. This new life gets overwhelming at times but I have to just keep pushing forward. There has to be a light at the end of the tunnel someday…. it’s just going to be awhile until we get there. We will continue this fight for the rest of our lives for Ronan and everyone else until a cure is found.

After Ronan and I left PCH it was about 2:30 and he was begging for Mexican food. Like father, like son. I took him to one of my favorite spots, America’s Taco Shop and he ate a huge bowl of salsa, chips, a carnita taco and an entire burrito! The kid has such an appetite and it was so nice to sit outside with my son and bathe in his happiness. My heart skipped a beat. The love I have for him is almost painful at times. After we were finished, we were walking to my car and he grabbed my hand and goes, “Thanks for the date, mom. I love you.” I was overcome with so many feelings at once; of my stomach dropping but my heart was singing. I never knew before all of this how many emotions one could experience all at the same time. These little life lessons I’m learning are not always fun, but I am thankful for them. Ronan and I came home, both tired and we curled up in my bed, I read him a book and then he does what he always does which is snuggled his little head below my chin and goes, “Goodnight Mama.” We both fell asleep. Although my sleep was restless, I still needed it.

Tomorrow, we will be admitted into the hospital until Monday to finish this round of chemo. He is handling it so well and is running around like normal. On Tuesday we will go out to San Francisco to meet with Dr. Katherine Matthay at UCSF. She won’t do a consult without seeing Ronan so off we go. Not excited about putting Ronan on a plane, but we will make sure to be extra careful. We have to get opinions from others so we will do UCSF first, and then head to CHOP in Philly, in early March. That is the plan as of now; but we all know how quickly plans can change. It will all have to do with how well Ronan’s immune system is doing as far as keeping our travel dates.

Thank you for checking in on us and keeping our little guy in your prayers. We know they are going to work. We hope you have a very blessed weekend!!

xoxo

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