Tag: oncology

Romama’s Busy Day

Ronan. I don’t have time to dig my hole this week, because due to a last minute invite…. I am so busy. And so tired. But in a very good way. I got an email from a lovie from T-Gen a few days ago. She wanted to tell me that Dr. Giselle Sholler was coming into town for a conference. She attached the info. I looked up the conference info and it said registration was closed. I emailed this lovie back and said, “Please, if there is anything you can do…. I’d love to attend this conference!” About an hour later I got an email back saying that I could indeed attend the conference and T-Gen would happily take care of my registration fees. So nice, Ro. I told your lovie, thank you so much! She replied back with, “Anything for Ro.” Thanks so much, T. You have no idea how much this means to me.

The conference is Monday-Wednesday and it’s all on Pediatric Cancer Genomics. Otherwise known as a foreign language to me, but I think I’m starting to understand parts of it. Just when you think you are starting to understand pieces of this childhood cancer thing….. you find out that you really have not a clue. I did not get home until 7 tonight and getting someone to help with your brothers was so last-minute as well. Thanks Sarah, so much. You saved me. I sat in a room full of so many amazing people. I felt honored to be among them. I saw your Dr. Eshun there. He is such a kind soul. He look surprised to see me. I gave him a smile and he tried to just shake my hand like he always does as he is so polite. I grabbed him for a big bear hug instead, like I always do. He asked how we were and wanted to know what I was doing at the conference. I just smiled and told him that if I was going to be an advocate for you, that I felt it was necessary to educate myself on what it is that I am advocating for; besides the obvious. I told him how I have been quietly watching Dr. Sholler from afar for a while and how I was interested in T-Gen as well. He said to me, “You probably know more about this stuff, then I do.” I just laughed and said I doubted it, but I was a fast learner. I told him I’d see him tomorrow. He smiled and said to have a good night.

Tomorrow the conference starts at 8 a.m. but I won’t get there until after I drop your brothers off at school. It goes on until 6:30 or so. It’s a long day but it’s a good long day to have. I love to learn and it comes easier to me when it is something I am very passionate about. You would be the passion behind this, of course baby doll. I was sitting in between 2 men all day. The one to the right kept falling asleep and snoring. I almost elbowed him and said, “Seriously dude?! My son died from cancer, can’t you at least act like your interested in being here?” I kept trying to read his name tag to see where he was from. It said his name and that he was from COG. I tried to give him the befit of the doubt, like maybe he had bad jet lag or was sick. If that were the case he should have just went back up to his hotel room because he slept though pretty much everything. The guy on the other side of the guy I was sitting next to looked nice. I caught a glimpse of his name tag. He was there for the Team Finn Foundation. I grabbed my phone and googled him right away. I don’t waste any time. I read about his son, Finn who died from Rhabdomyosarcoma. I grabbed Finn’s dad on the arm and held it there. I said, “I Googled you. I’m sorry about Finn.” His eyes started to tear up. “I lost my son, Ronan, almost 9 months ago to Neuroblastoma.” I don’t remember what we said next. I think Finn’s dad asked me, why I was here, besides Ronan. I said that was the only reason I needed to be here, was for Ronan. He is my teacher now and he knows I need to learn everything I can on this so we can hopefully help them if we believe in what it is they are doing. If I am going to support T-Gen, I need to do my homework. This is not a test I can flunk. This is not a test you can do over. I am here to learn what they are going to do with pediatric oncology that it will impact this disease in a big way. I am here to meet Dr. Sholler, so I can at least tell her thank you for being so kind to us as she was going to take Ronan on one of her trials in San Diego, but then your little liver starting failing baby…. and there was nothing else we could do. We were trying to get a plane to take us out there and everything. But you were dying even though we still had hope. So much hope. You organs, just started shutting down, one by one. I’ll never get the mental image of your skinny little body out of my head. It will haunt me for the rest of my life. I think about so much, all the horrible treatments you were put through. So much chemo, pokies, oral meds, sedations, surgeries, radiation….. none of it worked because if it did, you would not be dead. Your daddy asked me the other day, what I thought would have happened, had we done nothing? I can’t answer that question yet. Did the chemo kill you faster than just letting you be???

I remembering after you died that I was in such shock. I was sitting with your Mr. Sparkly Eyes and I just said to him, “How did he die? I mean, what happened?” I don’t  medically understand how he could just die.” Sparkly sat and explained it to me in a way that I could understand. Basically all of your organs started failing, then stopped working. Your heart just stopped beating. I thought why couldn’t we just get him new organs and a new heart? Somebody had to have those just lying around, right? How could his heart just stopped beating? That’s impossible! He loves me too much! I still think this way. Sometimes my heart feels so full of love like it did tonight when I met Finn’s Dad, that I swear it doubles in size. I think your heart lives inside of me, Ronan. I think that’s why when I feel really strongly about something or someone, the love I have for them gets twice as big. That’s all because of you. Our love is so strong. It is so amazing. It is going to change the world. I may have broken my promise to you about saving you…. but I’m not breaking this one, Ro. Our LOVE WILL CHANGE THE WORLD. Just watch baby. Just watch.

I’m going now. My brain will not shut up on genocodes/genomics/phenotypes/functional genomes/translational genomics//////// intense stuff///////// worth the raging headache and red eyes. Ready for tomorrow. Not really. But I need to get some sleep for tomorrow. I’ve been sleeping in your bed. It makes me feel close to you.

I love you my spicy monkey boy. I miss you so much. I hope you are safe. Sweet dreams, baby doll. G’nite.

Taylor Swift loves Rockstar Ronan! And I don’t love Obnoxious Complainers! So shut up!

 

 

 

 

Ro baby. I am trying to breathe tonight. I am trying to focus on all the yummy goodness that has filled my days. Because of you, and the effect you are having on the world. I actually had a lady come up to me today and tell me that I didn’t only change her life, but I am creating a movement. A movement, Ro. I hugged her. I cried. But what is new….. I’m always crying. Those were powerful words that she said to me, as she looked me in the eyes as I watched her eyes, well up with tears. I told her it was all you. Not me. Never me. Always you.

So, I am trying to let some things off of my chest because there are people who just don’t get this, or who do get it and just choose to ignore this and are not worthy of your story. They just are not. And I have to accept that. I cannot change everybody. I cannot change the person who knows your story, knows who I am but does not care. So, she sits in front of me and bitches about all the stress in her life, like the remodel of the 1 of her several homes. Complains right in front of me Ronan! And I am so pissed at myself tonight. I sat back and pretended like I wasn’t standing right there, as if I was invisible because I know if I let myself get pissed about the all of the asshole people in the world, that I am going to wasting a lot of time and energy on negativity. I have enough Inferno Fuckwad Bob in my life to go around for everyone. Do I really need to add to it? Do I really need to let stupid shit, get under my skin? No. But it does because I am human. And I know what it means to have real things to worry about such as just trying to stay alive. Every day I pray for death because the love of my life, DIED, of Childhood Cancer. I’ve got to come up with a new plan. And it cannot consist of the berserk fantasy moment I had in my head where I ripped this ladies hair out and told her to shut the fuck up because she has all of her babies and that is all that matters. I am going to have to take a less violent approach so I don’t get my ass shipped off to tent city with Sheriff Joe. It will maybe just have to be something like, “Oh, do you know Ronan? (slip her one of your little cards) Oh you do?(because everyone that lives in our very big but very small little city does) I am so glad. He is amazing. You know he died from Childhood Cancer, right? But gosh, I am really sorry that you are so stressed out over your home remodel. I hope it turns out to be beautiful.” Kill em’ with kindness, right Ro? Either that, or just choose to look the other way. Fuck that. I’m not looking the other way anymore. People need to wake up and stop bitching about such nonsense. Your house remodel, is NOT a problem. Your nanny quitting, is NOT a problem. Your nail breaking, is NOT a problem. Kids dying, everyday IS a problem. The dad just diagnosed with Lung Cancer, who is not a smoker, IS a problem.  All of the kids around the world, who don’t have homes or families, IS a problem. Not getting to wipe your babies sweet tears anymore, because he is DEAD, is a FUCKING PROBLEM!!!

Enough with the complaining about make-believe problems. Go visit a Children’s Oncology floor and then see if you can leave there, still bitching about your problems. Actually, do not go and visit this floor. The fact that you sat and complained in front of me today, is your fucking problem, not mine. You are not worthy being surrounded by all the beauty that shines off a kids Oncology floor. You are not worthy of any of the beauty that is going to come from Ronan’s story. Do you know what I heard today, asshole lady? I met the most beautiful family. Little Elizabeth Blair who has Stage IV Non-Hodgkins Lymphoblastic Lymphoma. She was talking about her bald head and how she doesn’t have blond hair, like her mommy anymore. Her mom just looked at her and said, “But where does beauty come from, Elizabeth?” Elizabeth answered right away. She said, “It comes from here,” and pointed at her HEART. Her heart ladies and gentleman. This 5-year-old knows more than most adults. This 5-year-old knows what is truly important in life. This 5-year-old is going to grow up to be an incredible young lady. I am pretty sure she would have anyway, due to the family that she is surrounded by. But now she has that extra sparkle in her eye, that most people do not. A sparkle in her eye, just like you did, Ro. The sparkle that is going to help to change this world. And hopefully make more people, stop complaining about stupid shit and doing something that will actually help to make a difference. Even if it means they just make their kids’ lunches for school and give the nanny/housecleaner, the day off. So be it. It’s a start. Baby steps can be done. They can be done and they can turn into something much bigger.

Maybe it starts with giving the Nanny the day off, paid of course and actually driving your kids to school, yourself. Then guess what? The next thing you know, instead of spending Thanksgiving basking in too many pies and food to eat, you and your entire family, spend a few hours, in a soup kitchen. Pretty soon it starts to set in that, “Oh my god. I am so thankful. I mean really thankful. I am thinking about that family today, who is having to spend their first Thanksgiving, without their Ronan. I have all of my kids. They are healthy. I want to be a good person. Not just a good person, but a REALLY good person. Because I am thankful. And blessed. And because so many people, are not. But deserve to be. So I am going to work really hard, to try to make a difference somehow, in this world.” Or maybe not. Maybe you would just sit around Thanksgiving, obsessing about everything you are going to buy on Black Friday. Obsessing about the Jimmy Choos that are going to go on Sale at Saks. This is probably the case. So in that case; fuck off. But I really hope your contractors are not late, AGAIN! I mean really, they were an hour late and you screamed and yelled at them because that is so much of a real problem? Those paid employees can be so rude sometimes. I don’t know who they think they are. The sense of entitlement of those blue-collar workers, is just beyond me. Shut up lady. Shut up and fuck off.

Oh Ro. Sorry your little post got Hijacked tonight. I just had to get that off of my chest. UGH! I have ONE more thing to say. Hang tight, little man. DEAR PEOPLE WHO STILL HAVE ALL OF THIER CHILDREN- Please STOP. I do not want to hear anymore, “Oh… Ronan is happy. He is in Heaven. God is taking care of him, you don’t need to worry.” I’m warning you NOW. If I have to hear this one more time, it is not going to be pretty. I get that most of you mean well, but you also have all of your kids. You get to watch them play soccer, you get to hang up their art work, you get to kiss them goodnight and tuck them in bed. You get to do all of those amazing things, therefore you do not have the right, to tell me my child is in a better place. Because I can tell you, I can fucking guarantee he is not. He is not here, with me, which is the only place he belongs. So please, keep your he is with GOD and in a better place comments to yourself. It may bring you peace, but it only makes me angry. Pray for me all you want. Bring on the prayers. But stop saying the things above. I’m going to start carrying a weapon with me, like Silly String. The next person that says this to me, is going to be douched in Silly String. You’ve been warned.

On to the amazingness, RO! Moving forward. Breathing. Inhaling the smell from your GiGi that is covering my face. It smells like you. Let’s start with the darling Taylor Swift. That’s a good story to end with. Or how about the “Fan Mail,” that I am getting sent to Katie’s Shop, like the Foster the People signed concert poster. Ummm… Hello lovie who sent me that. So rad. Thank you. Or all of my Ro Baby Maya’s Mafia Fans whom I met today, by chance, who just popped into Katie’s store to buy bracelets. So sweet. I loved meeting a few of you today. The love you have for us is so inspiring. The awaking I am seeing in these beautiful people, Ronan, is very moving and powerful. Just like you.

Crap… sidetracked! I just have too many great things to blab about! Back to T’ Swizzle. Who told her about you? Because I am so very sure, it was one of your little Fairy God Mothers down here. I was contacted by her event manager. “Taylor would like to extend two tickets to her show, plus a meet and greet with her, before hand. Are you available?” Was I available? Why yes, of course. I knew with all the amazingness going on, that I wanted to see if I could work my magic just a little. I have no shame, so I asked for 5 tickets instead. Poof! My wish was granted. Now, I just had to come up with a plan to reward some very special people in a very special way. I told Katie about the email. I knew the two of us, would come up with something very yummy and delicious to do. We thought about having people bid for the tickets, to raise more money for your foundation. We knew the tickets, could have gotten a lot of moolah. But that seemed to be defeating the purpose. We have been watching how hard, our little Rockstars have been working, to raise their 200 dollars to model in the show. Then Katie showed me this FB Wall post written by Elizabeth’s mom, the little girl with Stage IV Cancer.

Oh my SWEETNESS! Holy Willy Wonka! Today was the absolute BEST!!! Today we ran, walked, skipped, piggy backed, wheeled and twirled a 5K to fight Childhood Cancer at Grand Canyon University “Pinkalicious Style!” What does “Pinkalicious Style” look like you ask? Well, let me tell you we had everything from argyle to piggy tails, rainbow to more rainbow and lipstick! You can’t forget the lipstick. And oh my, the most AMAZING, “Beauty comes from within the heart” t-shirts designed by our multi-talented long time very special friend Chris Wahl!! He designed the most perfect shirt for my most perfect little girl. E’s Team consisted of not only the most incredible besties that a girl could ask for but also her past preschool teachers, babysitters, and new friendly faces of the kindest individuals who truly give the meaning to our team shirts. Beauty comes from within the heart. Team Elizabeth showed genuine beauty today. Each and everyone of us crossed that finish line in true pinkalicious style whether it was by wagon or walking, running or riding, age 5 or age 50. Medals were made and miles were gained all in the fight against childhood cancer. And well, Lymphoma, it can kiss our determined pinkalicious butts! Because we rocked it out there today! But, that’s not all. The kids also rocked it in our front yard today. They ROCKED it GOOD! As promised, Elizabeth, Kate and Bryce were fundraising full force with their Super Duper Candy Scoop Shop featuring a Rainbow of candies and Rainbow Manicures. Although, there was no rain, they each had a pocket full of sunshine and were ready to make things happen with a rainbow of colors in Pop Rocks, Gumballs, Lemonheads, cherry rainbow and pink lemonade Swizzle Sticks, gigantic Jaw Breakers, Gummy Bears, rainbow heart cookies, and rainbow manicures. Have I mentioned Elizabeth LOVES rainbow anything? The proceeds of todays fundraising efforts will benefit The Ronan Thompson Foundation. The Ronan Thompson Foundation and The Garage Boutique for Kids are hosting a Rock the Runway Fashion Show Event. My 3 kiddos are all participating. Although they may not all model, they all 3 are certain they want to help raise money to help in the fight against Pediatric Cancer. These kiddos made BIG BIG accomplishments today! I would say a top accomplishment for each of them to date. Their goal for today was to raise $200.00 each for a total of $600.00. Are you ready for this? Are you ready to hear what my kiddos raised in our front yard to fight Pediatric Cancer? $1019.64!! In three hours, these determined children fought for their sister, they fought for their cousin, they fought for their friends, they fought for your family, they fought for our family, they fought for Ronan and all the other children who have won or lost their battles to childhood cancer. They fought hard and they fought proud! My husband and I are so completely impressed with how busy these little bees worked today. But we are not surprised at the results! You, our community, our family of friends are more than generous. We had a complete stranger drive up and give $100.00! Oh my SWEETNESS! We have a toothache tonight from all the sweetness. We are blessed, thankful, and just so happy for all the kindness, love and of course beauty that comes from within all of your hearts. So whoop there it is! $1019.64 going to The Ronan Thompson Foundation. You are beautiful, The Blair’s P.S. Elizabeth went back to school on Wednesday!!

It was a no brainer. We wanted to extend the invitation to The Blair Family, to go with us. I had Katie call them today. She said it there were tears all around. My heart fluttered. I had not met The Blair Family, until today. Until after this phone call was made. About an hour later, they came bouncing into Katie’s shop. I hugged Elizabeth’s mama tight and we both cried a little. I rubbed the top of Elizabeth’s smooth, bald head. It made me miss you so much. Turns out, The Blairs, LOVE Taylor. They already had tickets. They gave their tickets to some friends and Elizabeth’s brother and Daddy get to go as well. We are so exited to take Elizabeth, her mama, and older sister, with us- to meet Taylor and to sit in some really good seats. It is going to be an amazing night. That Taylor, has a heart of gold. Just like so many of the lovelies that seem to be coming out left and right, Ro. They all love you so much. Amazing things are happening, my little man. All because of you.

Ro baby. I wish I could tuck you in but I can’t. So I will cuddle with your blanket instead. I will go to sleep, without my Ambien because the pain is something I need to be in. I cannot mask or cover it up. I will fall asleep with my tears soaking my pillow because it is where I need to be, now. I love you so much. I miss you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

Serenity now

Deep breaths and an amazing friends have gotten me through this past 24 hours. We were admitted into the ER last night around 9:00 due to Ronan’s low grade fever. I didn’t have to wait in the waiting room of the ER; THANK GOD. It was beyond packed even at 9:00 at night. The doctor on call, called ahead to let them know I was bringing Ronan in. As soon as we arrived, I told them our name and we were taken back into a room in the ER. Ronan was really not feeling well and was so tired. He passed out pretty quickly as the nurses checked all his vital signs and drew his labs. My friend, Fernanda, sent me a text to say she was on her way to sit with me because she did not want me sitting alone. She came armed with Starbucks and a big hug. We sat for the next 5 hours, trying to get Ronan into a room on one of the floors. Fernanda was on a war path…. but in the sweetest way so. There was nothing the nurses/doctors could do as they kept telling us all of the rooms were full on the floors 2 and 3, which is where we were supposed to be going. We used every trick in the book and Fernanda even tried to bribe one of the nurses with some Oreos that she bought in the vending machine. Didn’t work, but we got a chuckle out of it anyway. Finally around 3:15 a.m., the nurse said we would just have to spend the night in the tiny, freezing cold ER room. I was not a happy camper, have been saying some not so nice words, but have now relaxed due to Ronan looking and feeling 100 times better than when I brought him in here. Dr. Maze came and helped me out around 8 a.m. by using his very charming/stern words to explain that we needed a room asap. An hour later we were whisked off to the 3rd floor. Thank god for that man.

I got about 3 hours of sleep last night and I’m sure Fernanda didn’t get much more, but guess who was here at 9:30 a.m. to bring me coffee and keep me company? She was. Did I mention that my darling Fernanda has 5 gorgeous children of her own all under the age of 7?? Talk about an amazing woman and friend. Ronan didn’t even mind her being here and that is unheard of with him! I ran home to shower while Fernanda stayed with him. Made my day! He always throws a fit when I leave him, but was completely fine with this friend of mine whom he hardly knows. After I returned back here, Fernanda left and I thanked Ronan for letting me go home to shower. He said to me, “Your welcome, I like your friend.” So sweet!!!! He also was sure to tell me how much he missed and and how he loves me to the moon and back. Ahhhhh, little man!!! That more than made up for the recliner chair I had to sleep in last night and my seriously jacked up back today:) He seems to be feeling much better but just as I suspected, his ANC is at 0 and he needs blood. We will be here for most of the week I suspect. Fernanda…. I’m never going to stop telling you thank you for being such an amazing friend to me. And stop with saying it’s nothing…. because it is, and it means everything to me! I am so blessed to call you my friend. I love you.

Sarah came over this morning to help get the boys ready for school and to take them as well. Thank you so much, Sarah the Saint. Auntie Karen picked the monkeys up from school with her daughter Olivia and took them home to do homework and then to get some dinner until Woody got home from work. Thank you both so much; I am so thankful that Liam and Quinn are in such good hands.

I am running on empty and have downed 2 giant cokes, 2 coffees, and a ton of water. My typical hospital meals. Ronan is sleeping now and they are getting ready to pre medicate him for his blood transfusion. I am trying my best to channel all of the inner peace and strength I have for this weeks hospital stay. I am calmer than normal and it has everything to do with the fact that Ronan seems pretty happy to be here. I found myself thinking selfish things today like, I so need a massage, a pedicure, a spa day, a bath and 12 hours of sleep to feel better. It turns out I needed none of those things because just having Ronan acting somewhat like his normal self and being so loving and sweet to me, made all of the whining and complaining I was doing in my head, disappear. I think he was feeling really crummy at home and now that he is starting to feel better I can see him coming back to me. He is comprehending so much these days for only being 3 1/2. He is confused as to why we are on the 3rd floor and keeps asking for his normal nurses like Sara, Arica, Danny, Kathy, and Amy. I tried to explain to him that it is because he has a little cough that we have to be on the third floor for the time being. With it being RSV season, any little sign of a cough and you are banned from the 2nd floor. Tonight, he was telling me about all the people that take care of him and who love him. He named Dr. Wood, Dr. Maze, Sharon, “A,” and then he goes and Dr. La Quaglia took the big Death Star (he calls his tumor the death star from Star Wars) out of my tummy. He even pronounced his name right which was so dang cute. Ronan is so smart and doesn’t miss a beat. I’ve got to start watching what I say around that kid:) We have had a great night together but are so beyond tired. I’m hoping to get a little sleep as I am exhausted from the happenings of last night and the 3 hours of sleep I am running on.

Here’s to hoping tomorrow will be even better as he starts to get his strength and health back. We’ve got to get him well before transplant and I would like to be able to enjoy our time at home before we go in for the long haul. Thanks for checking in and keeping Ro baby in your prayers and thoughts. We are so lucky to have all of you thinking of him. G’nite sweet friends. G’nite Daddy Woo. Hope you are enjoying our big bed all to yourself:) Miss you.

xoxo

“Open Your Eyes“

All this feels strange and untrue
And I won’t waste a minute without you
My bones ache, my skin feels cold
And I’m getting so tired and so old

The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x4]

Get up, get out, get away from these liars
‘Cause they don’t get your soul or your fire
Take my hand, knot your fingers through mine
And we’ll walk from this dark room for the last time

Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x8]

All this feels strange and untrue
And I won’t waste a minute without you