No sunlight…. anymore

 

 

 

Ronan. Where are you? Why did you have to leave? I am missing you so much. We are home. Back to our house that is now so empty without you. Back to our life which seems so forced. Everything is lost. I’ve been going through the motions, doing all responsible things that comes with being a mommy and wife. I’ve been keeping busy with unpacking, organizing, answering phone calls,  running errands, playing with your brothers, trying to do all the normal things that are normal but do not feel that way at all. I went to the grocery store today. Quinn went with me. I haven’t been to our store since the last time I took you. You were so sick and you sat in the cart with your little hat on. You fought me on leaving because you wanted me to buy you a new toy. I couldn’t say no. I remember being so worried about taking you to the grocery store as I was exposing you to germs. I remember how I careful I was to make sure I disinfected your hands as I was so grateful to just have you with me, out and about. I swear I could hear you little voice in that store today. I was doing o.k. until I was at the Deli Counter. I remembered waiting in that exact same spot with you a few months ago. It was there that the tears started and I tried to fight them back as the girl behind the counter took my order. It didn’t work. I cried the rest of the time as everything in the grocery store, reminded me of you. Quinn noticed of course. As I was getting the milk I heard him go, “Are you o.k, mom?” I smiled and lied to his face and  told him I was. I was not. I somehow managed to pull it together as it took everything I had not to abandon our cart and run out of that place today. I now loathe the grocery store. I used to love everything about it, but now everything in there just makes me sad and nervous. It all seems so overwhelming. I wanted so badly to be pushing you in that stupid, germy, little car grocery store cart that used to make me cringe. I wanted so badly to be that mom that would have been worried about you catching a cold from all the germs on that dirty thing. I’ll never get to be that mom with you again. I cannot believe you are really not here. I can’t believe I’ll never get to take you to the grocery store again with me. I can’t believe I’ll never get to chase you up and down the aisles because you refused to sit in the cart. My entire life, I’ve never really known what true pain feels like but now, I feel like it’s the only thing I’ve ever felt before in my life. My world, without you, is painful every second of the day. Even while I sleep. I wake up sad, spend my days sad, go to sleep sad. I’m trying but I cannot escape the pain I feel, no matter how amazing your daddy is being, how beautiful your brothers are….. nothing can take away my sadness.

Yesterday, somebody asked me how many kids I had. I was out, trying to do some normal things. A girl was trying to make small talk with me. She asked if I was a teacher and I told her that I was just a mom. She asked how many kids I had. I told her I had twin boys that were 8, and I had another son who was almost four, that just passed away. I could hardly choke out the words and I just sat cried as I tried to tell her a little bit about you. I guess I wasn’t prepared for that question, or the emotions it was going to flood me with. I tried so hard to be strong and be so thankful for  the time that I got to have while you were here. All I could do was sob. I came home and cried some more. Every time I’m out, I cry. I feel like a walking waterfall. I have been going into your room a lot. I like to lay on your bed and cry there, snuggled up with all of your stuffed animals. Your sock monkeys, your Master Yoda‘s, your Julius.

Quinn usually follows right behind me. Last night when I was crying on your bed, he read me a story. He is still not wanting to leave my side. He helped me with all of the laundry tonight, he sat outside with me while we watched the monsoons, and now, he is laying right by me playing on his iPad. Oh Ro. He misses you so much. You two were joined at the hip. I watch him when he doesn’t think I am and I can see him looking for you, wanting to play with you, wanting to wrestle you, and I feel like he expects to walk into your room and see you there. Liam on the other hand is so independent. He has been spending a lot of time outside, playing on his rocks, talking to himself, playing in your room, with your toys, like you are still here playing with him. I am able to go into your room now. After I came home the first time, alone, and spent a lot of time in there….. I can do it now. I spend a lot of time crying on your bed. Your room is still my favorite room in our house. It always has been. Even before you got sick. I find if I need to breakdown, your room is the place I like to go. I feel safe in there. I want to keep it just the way it is for a long time. I like to sit in there and talk to you and remember all of the fun times we had in that room. Your daddy likes to sit in there and play his guitar and sing to you. We will not be changing it anytime soon. It needs to stay that way until we all feel like we are ready to change it.

I don’t have my week planned out. I have some plans tomorrow, some things that need to get done with your brothers, but I cannot plan anything out for as far as what the rest of our week will look like. That’s too much for me. I am just hoping to get a lot of things done, one day at a time. I cannot bear to think what a Tuesday, Wednesday, Thursday, or Friday will look like yet. I am such a planner, so this is hard for me. But I also know the feeling of being totally overwhelmed and I never know if I am even going to be able to get out of bed in the mornings to get my shit done. One day at a time works for me, as of now. I can’t ask too much more of myself at this point. I told you I was starting Boot Camp tomorrow, Ro. Remember when I would have to put you in bed with Daddy so I could sneak out at 5 a.m. to go? I was always so worried you would wake up and be so upset I was gone. Sometimes I would come home and you’d still be asleep. Most mornings, you would be cuddled up with your daddy, watching cartoons, waiting for me. It’s going to be so strange to walk out of this house tomorrow morning, without having to worry about you staying asleep. I told you if I don’t go to boot camp, I’m afraid I won’t wake up in the mornings. Today, everybody in our house, slept in until 11 a.m. That is MADNESS! I haven’t done that since college! It felt weird and it made me so depressed. We were all so used to you waking us up in the mornings, demanding your eggies and Mickey Mouse Clubhouse. With just the 4 of us, nothing is complicated, your brothers are so easy, such good helpers, such hard workers,….. we are all missing the spice in our life that came in the form of you. Life without you is depressing, Ronan. Dull. Stupid. Boring. Sad. You were everything to all 4 of us. EVERYTHING. Now we are back to square one. Back to routines, homework, school, family dinners, but you’re not here. You’re not here to help me cook, you’re not here to make messes for me to clean up. It’s just me while your brothers are at school. I don’t get to hear you screaming for “Guy’s Helmets!” because you wanted the correct Star Wars Helmets on the correct guys. I don’t get to tell you that you are driving me crazy because you are taking off all of your guys’ heads and they are all unorganized. We not longer get to have helmet hunting parties. What am I going to do without you????????

I cannot even think about this right now. I’m bawling and I have to get to sleep so I can get my ass out of bed and be productive. Come with me to boot camp in the morning, Ro. I’m sure Tammy would be fine with it now:) I love you little man. I love you to the moon and back. I hope you are safe. Sweet dreams, baby boy.

xoxo

 

Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

Just another hospital night, yo! I don’t miss my bed at all!

 

Tonight, my heart is peaceful and content. My mind is quiet; which doesn’t happen often anymore. Tonight, I am once again filled with a peacefulness that everything is going to turn out o.k. I’m not sure why. I haven’t felt this way in a long time. I’ve been so caught up with my worrying and trapped in a dangerous place where the darkness tries so hard to take over. It consumes me most nights… especially hospital nights. Not tonight. Maybe it was the fact that I had a much-needed day out of the hospital today and these little breaks seem to help me. Maybe it’s the fact that Dr. Kushner and Dr. Modak came to see Ronan and could not believe how well he looked for having a 0 ANC. Maybe it’s the fact that I got to listen to Woody tell me how well Liam and Quinn did at baseball tonight. How when Liam got up to bat, one of the coaches told him to hit this one for his brother and he cranked the ball out of the park. Or maybe it’s the fact that I just spent the last hour walking the halls of the hospital with Ronan while we both carried our toy guns and shot every person that came in sight. Maybe it’s a combination of all of the things above. Whatever it is, it doesn’t matter. All that matters is it’s moments like this that keep me going, pushing forward, with my head held high. These little moments will carry me though to the other side of this awful mess. With Ronan in my arms the entire way.

Last night was rough. Rough as in I got very little sleep due to our stupid “pole” or “asspole” as I’ve decided to name it, going off every 20 minutes. BEEPBEEP!!!! BEEPBEEP!!!!BEEPBEEP!!!!! So. Freaking. Annoying. Every time this happens, I have to push our little red button and say, “We’re beeping!” The nurse either comes in right away, or it takes 15 minutes. Not fun for anyone. Our poor roommates included. The nurse also had to wake Ronan up twice last night to give him his oral morphine since they took off his Fentanyl patch a couple of days ago. They are slowly trying to wean him off all of his pain medication and he is now down to a really low dose of morphine. Try getting a 3-year-old to cooperate taking a medicine he doesn’t like, while waking him up from a dead sleep. Needless to say, there was a lot of screaming and fit throwing in the middle of the night. Brutal. Rough night indeed but we survived; once again.

Today, we had Ronan’s last day of RT on his arm. It’s nice to be done with that. It seems like it has really helped his pain and I am thankful. My mom came to the hospital, armed with a bag full of toys. For a small town mama, she is sure doing well getting around this big city. Proud of her 😉 I was able to leave the hospital and Ronan with my mom with promises of my return with new Star Wars guys. I went back to the RMH, showered, and got ready to meet my friend, Ellen for lunch. Ellen is the mom of Phoebe, our last roommate at Sloan. They live about an hour outside the city and she emailed me yesterday to say her parents were going to watch the girls for the day so she wanted to know if she rode the train in, if I could come and meet her. I jumped at the chance and we had a lovely day catching up. I loved hearing all about Phoebe and how she is doing. She is such an inspiration. They will both be at Sloan on Monday so considering Ronan is up for it, we will make sure we get over to the hospital to see them. Such a nice family who so does not deserve any of this and it sucks we are getting to know each other because both of our kids are dealing with cancer. Why can’t cancer pick on the real jerks in the world…. Hello rapists, child molesters, child abusers, murderers?? Cancer does not discriminate but it should. Leave us nice people and our kids alone. A-hole cancer.

After my day with Ellen, I walked the entire city in search of a couple of new Star Wars toys for Ro. He would have had my head if I had come back to the hospital empty-handed. Mission accomplished. He was very happy with my findings. I returned to find a very sweet boy waiting ever so patiently for me. Best thing in the world to come back to this dreary hospital life to. He melts my heart like butter. I also came back to find some beautiful mystery New Yorker had dropped off some goodies for us and I think, donated blood, as they left a little key chain that Sloan gives you for doing so. They also left the sweetest hand written card and only signed it, “A New York Friend.” Dear New York Friend…. who are you, you lovely person, you??? Would love to meet you and tell you thank you in person. Your gifts were so thoughtful and sweet. I had just run out of my stash of Coconut Water too. Thank you, my mystery NYC friend. You made this mama smile today.

Ronan has been so occupied tonight by watching things on YouTube. Mainly Star Wars things and we have been cracking up. I’m going to put a couple of his favorite findings on my blog. Hope you all enjoy them. Thank you, once again for your love and support. Thank you for keeping our family close to your hearts. It is such a gift to us. G’nite my sweet friends. Love you all!

xoxo

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.

MIBG Day is here!

I wrote the longest post last night, only to have it magically disappear. I am so annoyed and was too tired to write anything over again. I’ll keep it short and sweet this morning as we have a busy day ahead of us. Today is the day of the MIBG scan. The scan where we will be able to pinpoint exactly where Ronan’s cancer is still active. The scan that will light up his little body down to every active cancer cell. We are praying for a miracle and hoping the scan comes back showing a lot less activity. I know it is too much to ask for it to all be gone, but I’m asking anyway. Please keep Ronan in your thoughts and prayers today. I will update you all as soon as we know something. It may be awhile, as the team of doctors want to go over all of the scans combined. I am still going to get the MIBG read for me today. Dr. Eshun is pretty good about getting back to us as soon as he knows anything. So, here we go today…. at least it is Ro’s last anesthesia for a while.

Yesterday the event at Los Palomas turned out beautifully. It was sold out and the room was filled with the most gorgeous women in the valley:) I had Tricia represent me, as I couldn’t be there due to being at PCH all day. She got up in front of everyone and read a little something I had written. I am so proud and honored that she was the one standing up there for me. Thank you, TT. You are the most amazing best friend to me. Thank you to Jaye and her wonderful board members for dedicating your entire day to raise awareness for Ronan. It means so much to our family.

After we returned home from the hospital, we had a great day playing outside and around the house. Ronan is feeling so great and it is days like yesterday that keep me going. Yesterday, I watched my baby play and act just like a normal 3-year-old who doesn’t have cancer. He was acting like his old self and was so happy and sweet. Days like yesterday don’t happen very often anymore but when they do, they mean so much to me.

I’ve got to get my little guy ready for the day. Thank you all for the love and prayers. I hope you all have a beautiful day!!

P.S. New York Miss Macy!!! I will be thinking of you during your travels today for your big move to San Fran! You will always be New York Miss Macy to me though. I can’t wait for your visit and I can’t wait to wear our Spirit Hoods together you crazy girl!!! I love you!!!

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo

There’s no place like home

The morning started off early and Stacy offered to bring me coffee; which I really needed. She then ever so sweetly offered to stay with Ro so I could run home and shower. So thankful for her because just being able to go home and shower makes such a difference in my day. Ronan was so great with her and he is now getting used to my friends who are coming in and out to help me. His ANC counts have come up to 56…. slowly they are jumping up. Hoping for better counts tomorrow. He has been a little grumpy today but I finally got him out of his room and into the playroom for about a half an hour. That seemed to help his spirits even though he was insisting that he wanted to go back to his room. I told him that we were getting out of that stinky room for awhile and going to do something fun. We ended up painting and picking out some Mickey Mouse movies to bring back to his room. We have been playing on one of my friends’ iPad as it has a ton of games on it that we’ve never played before. She dropped it off at my house this a.m. and it has been keeping us busy for a couple of hours now. Thanks, darling:) Ronan and I also disinfected his entire side of his room tonight. My skin was crawling thinking about the germs everywhere… we tided up his entire room and wiped down everything from his Star Wars guys to the freaking floor. GROSS. Do not get me started on the cleanliness of hospitals. It freaks me out. I have taken it upon myself to wipe everything down, everyday. Makes me feel better in a way. Weird and silly but it’s a feeling of control that I need right now.

Liam and Quinn’s 1st grade teacher called me yesterday and offered to sit with Ronan tonight so I could run home and see Woody, Liam and Quinn. BEST TEACHER EVER:) Thank you, Cindy<3 She is on her way now and I cannot wait to get home to my big boys for a couple of hours. I may stay the night at home tonight and let Woody stay at the hospital. It would be so nice to spend a little time with Liam and Quinny Q.

Home sweet home now. Got to see Woody and catch up on some things. It was beyond nice to spend an hour with him before he went to PCH to spend the night with Ronan. It feels so good to be home and so good to be with Liam and Quinn. I miss them so much. We spent the night playing “Little Big Planet,” and they both helped me with chores around the house. They are the sweetest boys’ in the world. I can’t believe how tall they have gotten! I swear they have grown a few inches since I’ve seen them last! Quinn has sprouted up and is a couple inches taller than Liam now. Woody said tonight he bets Quinn is going to be 6’8 or 6’9. My 7 year olds are going to be taller than me soon. So scary! The boys’ had 2 basketball games today and sign ups for baseball. We are trying to keep them as active as possible and everything as normal as possible for them still. From what Woody said, they both did amazing at their games today. They were both very excited to tell me about them. I loved hearing the excitement in their voices; my little superstars. Team Thompson rules;) I am so proud of them.

Time to try to get some shut eye now, I’ve got to be back to PCH early so Woody can go into the office for a few hours and get caught up on some work. Hope you all are having a beautiful weekend. Sweet dreams<3

xoxo

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo