A pretty perfect playday with our new friends and a hummingbird.

Ronan. Monday. Presidents Day. Or in other words….. your brothers get to stay home from school day so you’d better act like a normal mama, and make a fun plan for them like you would have back in the day. A fun plan was made for me a few days ago.

Incoming text message from Margarita: Do you want to take the boys roller skating on Monday? On the west side?

Me: Total awesomeness. Roller skating? On the west side? That is so dangerous. Yes, please.

A plan was in place. One less thing I had to think about.

The morning came and I woke up feeling extremely hung over for some reason. It was not due to the imaginary shots/wine/beer I drank. I think I was hung over from the amount of restless sleep that had consumed me once again, during the night. I hopped in the shower, got your brothers up, showered and we were out the door and shoved into this bright, bright world. I took them to Taylor’s for breakfast. “Table for 3?” the waitress cooed. My brain automatically went to, no… table for 4. Where’s Ro? I looked behind me. “Oh, yeah. Table for 3, please.” Fuck. That will never sound right. I sat with your brothers and watched as they inhaled their food. Pancakes, eggs, fruit, 4 sides of bacon, toast. Geez. I cannot keep those brothers of yours, full enough. They eat twice as much as I do. You would have given them a run for the money though. Oh, how you LOVED to eat. You were always my best little eater. We finished our breakfast and drove over to Rita’s house so we could follow her to the roller skating rink. Or as I was soon to discover, my heaven.

Your brothers were excited as they had never been roller skating before. We entered the facility which was packed full of every different kind of person you could imagine. Tiny kids, young kids, tweens, teenagers, adults, grandparents…. you name it. The roller skating rink was dark and disco colored balls lit up the ceilings. I was instantly transferred back to 1989, where problems did not exist. Ummmm…. excuse me. How did I not know that this place existed? A dark place you could go, in the middle of the day, where the best/worst top 40’s music is so loud that you could hardly think straight…. all while on roller-skates! It does not get any better, than that. Your brothers were less than thrilled. I don’t think they will be trading their basketball shoes in, anytime soon for a pair of roller-skates. I got the two of them out on the rink a couple of times, but they were so uncoördinated all they did was skate, fall, skate, fall…. over and over again. They were not the least bit impressed with my mad roller skating, look at me, I can twirl around skills. I held their hands as we tried to skate together. I did not hold back my laughter as they continued to fall. They both reminded me of that scene in the movie, “Bambi,” where he is a baby and he is just learning how to walk. Legs flying everywhere so long that little Bambi just cannot get them to cooperate. They were both good sports and by the end of our hour there, I had Liam skating around the rink hardly falling at all. Quinn was over it pretty fast and could not wait to get out of there. I could have stayed there all day. In fact, the next time I go missing in the middle of the day…. you’ll know where to find me. Great Skate hanging out with my new mid 40’s man friend with the most epic mullet and Van Halen shirt I have ever seen. Next time I go I am totally rocking my Van F-ing Halen tee so we will match. Great Skate rules.

We continued on with our little playdate and Rita and Dragon, came over. It was a spur of the moment, let’s salvage the day and play plan. It was our first play date with them and the boys were excited to have their new little friend over. Their little friend was just wanting to play with some trucks. “I’ve got some trucks,” I said to Rita. “Come over.” So they did. Little Dragon had trucks on the brain so I led him into your room. Rita gave me a look and said, “Are you sure???” I told her I was without a doubt sure. I practically begged her to let her little Dragon, into your room to play with the baskets of toys that are just sitting there. We grabbed about 6 trucks and headed out into your backyard. Rita looked at me again, “You’re really sure.” I gave her my best I’m strong but really sad smile and said I was absolutely sure. That it would make me sad, if your toys were not played with. And play that little Dragon did. Alone for a while, while Liam built pirate ship legos in your room and Quinn tossed the football around with me. I heard Rita yell, “Where in the world did you learn to throw a football like that?!” I yelled back at her, that I wasn’t sure, but apparently it meant I was meant to have all boys. Quinn and I were tossing the ball around for about 15 minutes when it happened. I was feeling good about being a good mom, and playing with Quinn. I never feel that way anymore, mainly due to the fact that I feel like I am freaking crying/hiding all the time. I was standing in our yard and I kid you not, a purple headed humming-bird flew right up to my face and stayed there for a good 30 seconds. I thought it was going to kiss my face. What in the world? Am I dreaming this? I froze. Hummingbirds don’t come this close to people and just stay there, do they? It’s head is purple…. I thought to myself. I must be dreaming. Or dead. Then I heard Quinn, “MOM! The hummingbird! It’s head is purple!” Just as he said those words, it flew off. Whoa. That was weird. I’m not dreaming. Quinn saw it too. I didn’t know what to think or do, so I continued to throw the football back and forth with Quinn. I couldn’t stop thinking about the hummingbird. Was that a sign? A Ro sign? I don’t know but you always hear about how after you lose someone you love, signs appear. Was that it? Or was it just a freaking hummingbird? I told myself not to over think it. Just to go with it. It was a little Ro sign indeed. It’s been a while since I’ve had one of those and it felt nice. Thanks baby.

We played outside for the next couple of hours. I watched Quinn play with little Dragon, just like the way he used to play with you. It hurt/felt good all at the same time. I felt my heart fall in love with this little Dragon that I hardly know, instantly. I watched the way he played in the dirt, destroyed part of Liam’s army Alamo that’s set up by our rocks, played trucks, laughed with Quinn, they took the hose and washed your truck together. Everything that they did were all the things Quinn used to do with you. It was almost too much, but it wasn’t. It’s just the way it’s going to have to be from now on. All that mattered was that two little boys’, had the best play date ever and they were both happy. That in turn, made me feel alright. That little humming-bird appeared again and did the exact same thing to me, just as our day was coming to an end. I think it was your way of telling me good job for being such a good mom for the day. I think it was also your way of telling me that our new friends are extra, extra special. I kind of already knew that though. After our friends left, I fell apart in the garage and let myself cry for everything that used to be, but will never be again. I mainly just fell apart because I miss you so much and I have no control over how much it hurts sometimes. Uncontrollable tears are part of this process. I’m sure they will be, for the rest of my life. I’m o.k. with that. I’m o.k. with the tears. You are worth each one of them.

Today was pretty awesome. Not really, because all I did was get caught up on everyday things that I now hate. And I went to the freaking grocery store, which you know I hate. It’s one of the places, that I miss you most. “Come on Maya! Be a good mom! Get your kids some healthy food and try to cook at least 2 meals this week! You can do it!” That was myself, giving myself a pep talk today as I almost aborted grocery store shopping mission. I pushed my little cart, though out the store and missed you so badly, that I found myself magically transported to the toy aisle where I could not move. Frozen in front of the Star Wars toys on aisle 9. I wonder if Ronan would like this guy…. Oh! A guy he didn’t have! Should I buy it? The conversations in my head go on and on all day long like this. The anger came next. -Maya get out of the fucking toy aisle. Ronan is dead, you do not need to buy him any Star Wars toys today. I went and took my anger out on the Kosher food aisle instead. I’ve never made Potato Latkes before. I’m going to make some fucking Potato Latkes today. I’m going to peel, a fuckton of potatoes and make the best Potato Latkes that have ever existed. I drove home after the grocery store and took the rest of my anger out on cleaning out our refrigerator and getting all the laundry done. I find myself, washing the blankets and sheets in your room, just to do so. Sometimes I secretly think if I wash them enough times, you will come back. Or sometimes I don’t want you to feel left out, so I wash your clothes too. Your little socks are still in my purse. I take them everywhere.

I went on a run tonight to clear my head. I wore my new favorite running shirt which simply says, “Fuck Cancer.” It makes me run faster. I guess I’m still sick because 5 minutes into my run, I started coughing and my chest was burning so badly that it felt like it was on fire. I told myself to suck it up even though all I wanted to do was turn back home and crawl into bed. I didn’t though. I ran so hard/fast for 5 miles that I ended up throwing up on the side of the road. I heard the little voice in my head telling me not to stop, because how was I going to Fuck Cancer if I gave in so easily to the pain of my run, due to being sick. Being sick is for the weak. You were never weak which means I have no right to be either, baby. I sucked it up today for you. I finished my run, came home and took Liam on a date. We went to dinner, where another little thing happened. There was this girl there, playing acoustic guitar and singing. She’s really good, I said to that Liam brother of yours. He agreed. I heard her say, “The next few songs are going to be covers of Taylor Swift.” No freaking way, I thought. Who is this little child prodigy who just made my Ronight? Liam and I listened to her. I held his hand. We both smiled. It was if you were there with us, on our little date. I need this girl, to play at one of our events. She’s awesome. After we paid the bill, I gave Liam some money, a bunch of RoCards, and about 6 bracelets. I told them to put them all in her tip jar. He was so excited to do so. I hope she looks at your little face, looks up this website and something Romazing comes out of this. I think she was worthy of you tonight. Her voice, guitar playing and choice of songs told me this. Liam agreed. After our dinner date, I took your smarty pants brother to the bookstore. My other heaven in life. The book store. I could spend hours in them and so could he. His love for reading has taken off like wildfire! I am so excited about this as I was always such a bookworm. Reading used to be one of my favorite things to do in life. I miss it. Maybe it’s time I start taking it up again. I kind of feel like I could be ready. We shall see. It’s the lack of concentration that seems to be killing me. That and my non-existent memory… the one that I can’t find. Has anybody seen it? I would really like it back…. it’s starting to become a problem. You know it’s a problem when your daddy comes home from work, looks at me and says, “What did you do today?” My reply is always, ” I can’t remember.” And I literally never can. Then I get frustrated, start to cry, and wonder if my brain will ever be the same again. At this point, I’m thinking no.

Much more to write about little monkey man but your brother, Quinny, is looking extra snuggly. I’m going to curl up with him for the night. I’m sorry I can’t curl up to you. It breaks my heart every night. I love you so much. I miss you so much. I hope you are safe. Please, please be safe. Sweet dreams little man. ILOVEYOUILOVEYOUILOVEYOUILOVEYOUILOVEYOUSOOOOOOMUCH.

xoxo

Whipped Cream Kisses for Dessert

Ro baby. What in the world happened last night and today that I can exist on only 4 hours of sleep, like it’s no big deal? Oh, I know….your death. This coming from a girl who used to easily sleep 8 to 10 hours a night. Sometimes 12. I was totally that girl, that mom, that me. Not anymore. The peacefulness of sleep is hard to come by, especially on nights like last night where nothing out of the ordinary happens; just reality. Last night I fought sleep until 6 a.m. I did a lot of talking to myself, played a lot of musical beds, sent some emails, posted some stuff on FB about zombies and how 4 a.m. sucks. 4 a.m. sucks, but 6 a.m. when the birds start to chirp, is even worse. 6 a.m. and you know enough is enough, so you pop an Ambien because nothing else works. I slept from about 6:20-10 a.m. I got up, showered and my mind was racing with things that I needed to do, for your foundation. So much stuff that it was making my head spin. I went to my little Starbucks office and worked away not even feeling the hangover from the lack of sleep. I was really productive during my hours at the Starbucks office, despite the extra annoying, really bad soft porn music that blared from the speakers. I got recognized by a RoFan of yours which I was really surprised by because I only go to this Starbucks for the reason that I won’t run into anyone. It’s my secret Starbucks office where nobody knows my name. Or so I thought. Today, this girl was sitting by me for a while with a boyfriend or boy friend of hers. They got up and left and I was so into what I was doing, that I hardly noticed. A minute later I noticed the girl as she came walking back through the doors and headed straight for me. I looked up just as her soft eyes asked if I was Maya. I smiled and said yes. She told me she reads this blog. I asked her how long she had been reading it for and how she found out about you. She said she heard about you when we were on Channel 12, about needing an airplane to get you to New York. Whoa. What a sweet, loyal dolly. She’s been reading for a long time. She told me how sorry she was. I tried not to get choked up as I looked into the eyes of this girl who I swear could have been 17. I gave her a bunch of your bracelets and RoCards. She seemed so nervous and shy. I told her thanks for saying hello. I meant it. She made me smile.

Margarita stopped by the F U Cancer Starbucks office to say hi and help me with some things. Turns out, by the time she arrived my brain had turned to mush. I’m pretty sure she was looking into the eyes of a zombie but she still managed to make me laugh. A real laugh too which only a few people in my life seem to be able to make me do anymore. She being one of them. I had filled out an application for something (which will remain TOP SECRET classified information until more comes of it) and my application totally sucked balls. I filled it out last night during my insomnia marathon. Margarita looked it over and goes, “Yeah… I think we can do better than this.” HA! There is nothing I appreciate more than someone who can tell it like it is. She may have saved our secret mission today because if I would have actually sent in what I had filled out, I can guarantee you it would have went right into some fancy NYC recycling bin. Thanks, Rita. Rawr! You are a RoSaver! The rest of the day/evening was spent with your Luke, Daddy and brothers. We all went to the batting cages and hit some balls. I tried to enjoy it but as you know, when going to places like this I am constantly looking over my shoulder for you to appear. I don’t think I’ll ever stop looking for you. I watched your brothers as they ran around full of so much love and life, just like they should be. I closed my eyes and imagined you were there with us and for a split second, everything in the world was perfect. Simple perfection was ripped to shreds by the reality of Hell when the giggles of a child nearby forced me to open my eyes, just to make sure it wasn’t you. It wasn’t. Fucking fuck.

These are the things I’ve seen in the past 24 hours that I just can’t deal with because it is as if salt is being poured into an open wound. The real world. The real, non bereaved, I didn’t lose a Ronan and you did world. A lunch in the middle of the day at your favorite restaurant. A lunch with the best company in the world. A new friend and an even newer friend on the most delicious day (sunny. breezy. chilly. not rainy. sunny was delicious before you died) We sat outside as the breeze whispered in my ear and I swear I could hear your voice. My eyes gazed up from the menu only to fall on the table nearby. A mom. A dad. A little boy, around 3. A new baby. The little boy, roams carelessly around the tables. Almost in a mocking sort of way that only a grieving mother would feel. The parents look on, and drink their bottle of wine in the middle of the day. A whole big bottle of red wine. Another one is ordered. They pay no attention to the little boy as he wanders off, far off. Not far enough to get swiped up, but maybe….. it could happen. But the mom and the dad are so calm, so clueless, so free that they don’t mind. They trust in the world that the fates will be kind as they let their child wander about. They look as if they don’t have a care in the world and their big bubble looks oh so delicious. I watch with my blood-shot eyes, worrying……..over what? I’m pretty sure the cancer grim reaper does not live at Chelsea’s Kitchen. Hey! That’s too far! Hey! He’s talking to strangers. But the strangers just smile and laugh. He’s so cute they say. The mom and the dad don’t really reply, they look up and smile instead at the strangers almost in a conceited sort of way. They gaze into each others eyes as they’ve just had the best sex of their lives and now they are going to drink more wine and do it again. Their children certainly don’t cramp their style. They are so mellow and laid back. I’m pretty sure the VW bus strapped with surfboards on the hood and the California license plates, belonged to them. They continue to drink the wine. The little boy returns to the table. The mom orders dessert. The little boy goes back up in his high chair. So high. I watch as he eats the whipped cream with his mama. I watch her kiss it off of his lips, they way I used to kiss it off of yours. She asks for more wine. She is tiny, I think to myself. How can she drink so much wine? Don’t they have to drive home? Oh, how I hope they walked. But even that scares me. They have a brand new little baby, too. I’m confused. Wine. Toddler. Baby. Middle of the day. Smiles all around. Is this really real? Who lives this reality? It certainly isn’t mine. Is it everyone else’s, but mine? The little boy finishes his desert. He isn’t strapped into his high chair. He stands up in it and nobody cares. Or maybe it is that thing they seem to have going on where they trust in the world so much so they just know everything will be o.k. What’s that like? I can’t remember. He stands up and I start to count. 1,2,3,4,5…………. Hey! How is that allowed? He could fall! 45 seconds later and he almost does. But his mama swoops in to catch him right before the waitress does. The waitress gives a nervous giggle. The mom does not. She giggles as if something was truly funny. How is she so carefree, I wonder? Must be the flower in her hair. The long, flowy childlike hair. My lunch dates watch this interaction as well…. but not as closely as I do. I am borderline, obsessed. I would have never been so carefree with Ronan in a restaurant, I think to myself. I would have never let him wander without keeping my eye on him every single second. I would have never let him stand up in a high chair for 45 seconds only to catch him right before he fell. I would have never drank 2 bottles of wine, in the middle of the day. Or ever. What’s their secret? Because clearly they have the key to happiness. It was all over their smirky faces that were saying to me, you have a dead child and we do not! Sucks to be you! Or maybe they really do but I’ll never know. I know I cannot truly know the story of this family by my 60 minute observation. But in my mind, the story that I had made up in my head, was too much to take. After the almost high chair falling incident, I looked up at my 2 new friends like a deer in headlights. I’ve gotta go. This is giving me way too much anxiety. They both knew it and we quickly up and bolted. After paying, of course. Thanks, Rita;) I left your little restaurant, and that family behind yesterday. But not without feeling the stings from the open salt wound that is now my heart.

That’s my story tonight baby doll. It’s late. I’m tired but not really. I will try to sleep. I love you so much. I miss you. I hope you are safe. Sweet dreams. G’nite.

xoxo

Do or do not; there is no try- Yoda

 

Look how easy it is. A letter already written for you, to help be a voice for these kids because they are too little to do so themselves. Please take the time to do this. In the name of screw the viagra! Kids’ with cancer matter more! 

http://www.kintera.org/c.8hKOI3MFIjI2E/b.6440521/k.82B3/Action_Items/siteapps/advocacy/ActionItem.aspx?c=8hKOI3MFIjI2E&b=6440521&aid=517204

Diamonds Are Not a Girl’s Best Friend

Ronan. Does it sometimes feel like I want to rain on everybody’s happy parade? Because I don’t. I am happy there are happy people out there. I am happy that most people out there do not know what it feels like to lose a child….. well, I may be taking the happy word a little too far, because you know I don’t know what happy feels like anymore. So let’s tell it like it is…. happy is not the right word. I am glad. Glad that most people won’t know this pain. But I really hope from reading this story, they get how lucky they are and they choose to live life a little differently. Just by knowing how it really is the small things in life, that matter the most. The sweet whispers of a child, the helping of a stranger, the butterfly kisses of the world, a child’s hand, laughter, a solid marriage, strong friendships, true friendships, loving yourself, soul mates, being kind to others, sparky eyes, and helping when you are in a position to do so. These are the things that matter in life. Nothing else.

I have some bereaved mommy confessions to make. I have a lot of them, but in order to confess them all, I would need to write a book. And maybe a good attorney to keep me out of jail. Let’s just start with a couple tonight. The one that makes me feel like such a jerk. Let’s call this one, “Confessions of a bereaved mommy who now hates to wear jewelry.” This didn’t happen until after I lost you. Until I started wearing your ashes around my neck. Until one day, I looked down at my diamond ring and got really mad. It made no sense. I did everything right. I married the right man. We loved each other. We had formed a house full of respect, love, compassion, strength and honesty. But now our baby boy, was dead. But I had the pretty jewelry. The jewelry was there, but you were not. I didn’t want the jewelry. I only wanted you. I slowly started to put all of my pretties away. Christmas and my birthday came and went. Guess what was given to me? A new pretty ring and matching earrings. Tears were cried over the gifts that I did not want. Your daddy only wanted to make me smile. But I cried instead. Take it away. I don’t want it. It’s too pretty for me to wear. And I am so ugly. Can’t you see how ugly and sad I am?? I don’t deserve to wear this pretty jewelry. I have Ronan, around my neck… I don’t need anything else. None of this stuff really matters and because life is not fair, the jewelry gets to stay and Ronan gets to die? I want the jewelry to die, instead. Your daddy insisted I keep it all. I did. I tried. I’ve worn the pretty ring and earrings once and it didn’t make me happy; it just makes me sad to look at. I put it away with the rest of my things. It came up tonight, again. I begged your daddy to take it all back. “I won’t wear it!” I told that daddy of yours. “But you are so thoughtful. Thank you. It really is the thought that counts, Daddy Woo….. but the only thing I need to wear…..is Ronan.” I’ll mix it up a bit, Ro. I’ll wear some inexpensive skull bracelets around my arms, your bracelets, or some cheap Forever 21 jewelry that is bright, but diamonds, gems, stones….. I can’t do it. I used to think diamonds were a girls best friend. I thought that, until I had my best friend taken away from me. A diamond cannot replace you. A diamond cannot bring you back. A diamond cannot make me smile. A diamond only makes me sad. I fight with this a lot. Because I know anything and everything your daddy does, comes from such a good place. So why can’t I just suck it up, smile, and wear the pretty things? I mean, really…. it could be so easy to do. If I were a fake. But that’s just one thing I’m not. I cannot suck it up and fake it with the stupid jewelry. This makes me feel like a big, fat jerk but I cannot look away from the lesson I’ve learned from all of this. Pretty jewelry, and I don’t care how much you have….. will never truly make a person happy. When everything else is stripped away, when the most important thing you’ve ever had in your life, is taken away and all you are left with is pretty jewelry….it will not mend a broken heart. It really just DOES NOT matter. It is not what is really important in life. It won’t stop the tears, sadness, emptiness, or loneliness one feels. It won’t bring back my smile or you. It is only a reflection of broken promises, hopes and dreams. It’s a facade. It is overcompensation for what was supposed to be, but never will be again.

I tried today. So freaking hard to have the HAPPIEST ROENTINE’S DAY EVER! I had some productive things to take care of. I had a meeting. I put on my game face. I did a lot of nice things, for others. I brought cupcakes to your Sharon at PCH. I had coffee with your other lovie and gave him our card. The smile it brought to his face, made my entire day. But his smile did not come with false words like most peoples do. His smile came with watery eyes and words like, “I know you are in excruciating pain…..” I know he knows, which makes my pain worse. I don’t like that other people hurt because of this. I never wanted to hurt anyone, Ro. Especially the one’s we love the most. It makes me sad.

Our new friend, Margarita, dropped off dinner because I have seem to have lost my cooking skills/desire. (Total inside joke for my Saline Bean…. (“I seemed to have lost my keeeeysssss”) I sat at our table, in your spot and opened the cards from your Daddy, then Quinn, then Liam, and finally, you. Your card sang. I could hardly listen to it because the tears just started pouring. I smiled through my tears, kissed your daddy and brothers and told them thank you.

I drew a hot bath. Your brother, Quinn is still sick and Ronan…. confession number 2 of the night…. I cannot take care of him. It’s all I’ve been doing since Saturday and I am about to crack. I think I’ve become a bad mom. I would have never had these feelings before losing you. I feel like a big weight is on my chest. I feel like I can’t breathe. I feel like I don’t want to be a wife or a mom anymore. Do normal people feel this way? Or is it just me? Have I gone mad? I think so. I must be mad. Insane. And sad. So very sad.

I tried to make it a very special day, Ro….. but all I did was think about you and Ben. Ben with the Bald Head. Ben who likes to eat sushi and listen to The Beatles. Ben who has a very sad mommy for the worst reason possible. I’ll attach Ben’s caring bridge tonight because I need everyone to send them their extra thoughts, love, prayers and whatever else you might do. I’m only sending them you, Ro. Only you.

http://www.caringbridge.org/visit/benpurcell/journal

Please think about Ro and Ben all you people out there, reading this. Please don’t just make this your bedtime story while you sit reading it, dripping in your diamonds or ice cream. Please do something to help us change this… for your kids, your grandkids, your neighbors, your friends, for anyone you love. Please help us change this, because as of now…. our pain is not yours. But bubbles can burst at anytime. Never trust a bubble.

Ro baby. It’s Ambien coma out tonight. I have not taken anything in a week. I have been sleeping like a baby, in your bed, without Ambien. I’ve been sleeping in my dead babies bed. I can’t believe this is true, but it is. Today was too much. Tonight is too much. I need a break. I just need a break from all the screaming, crying, laughing, T.V., conversations, vivid dreams of everyone but you. Where are you? Why won’t you visit me, in my dreams? I miss you so much. I’m so sorry, Ronan. I hope you are safe. I love you, baby doll.

xoxo

Please help Rally around these kids!

My friend, Cindy, left this on my comment page tonight. I am so sad, outraged, and sick about this. How can this happen in this day and age??

I know you are all wanting to help and you have been so supportive in every way. If you can please take the time, to read below and help out with this it would be much appreciated. I know what I will be doing tomorrow. These kids deserve better. These parents deserve better. Things have to start to change.

My husband said it best tonight…. “That leukemia drug shortage is bullshit. Bet they never run out of Botox or Viagra.” Tru dat, Wooddawg. Tru dat.

Thanks lovies,

xoxo

Maya,
The Rally Foundation sent out a great email about this today giving the links to the proper people to contact including the manufacturers and what exactly to ask for. I hope you will find this helpful and pass it on so that the word gets out and we bombard them to step up production. These kids suffer enough from lack of funding and research and to not have a medication that does work is just plain wrong. Thanks!
Cindy
IMMEDIATE ACTION NEEDED

Dear Rally Families and Rally Supporters,

The past few days Rally has been receiving calls and emails from concerned parents and supporters asking if it is true that there is a critical shortage of preservative-free methotrexate, a vital drug for children with the most common form of childhood cancer, Acute Lymphoblastic Leukemia (ALL). Unfortunately, this is true. As you know, Rally’s mission is to find better treatments and cures for childhood cancer. Unless production of preservative-free methotrexate increases, hospitals will run out of the medication completely in the days and weeks ahead. Some institutions have already begun rationing preservative-free methotrexate.

Chief of Oncology at Children’s Hospital of Philadelphia and member of Rally’s Medical Board of Advisors, Dr. John Maris, M.D, was recently featured on CBS news discussing the issue. This news story will give you a good overview of the problem.

The childhood cancer community has come together as a whole and is asking all supporters to help. PLEASE ACT NOW! This is how you can help:

Contact the US manufacturers of Methotrexate and ask them to:

1. Prioritize the production of the preservative-free form of methotrexate.

2. Consider working with the FDA to import preservative-free methotrexate if sources are available.

Hospira, Inc.
1-877-946-7747
http://www.hospira.com/GlobalPages/contactus.aspx

Mylan Inc.
1-888-258-4199
http://www.mylan.com/contact_us.aspx

Sandoz, Inc.
1-609-627-8500
http://www.us.sandoz.com/contact_us/general_contact.shtml

APP Pharmaceuticals, LLC (currently does not make preservative-free methotrexate but is working to get FDA approval to do so)
1-888-386-1300
appmedicalinfo@APPpharma.com

Second, contact your Members of Congress and ask them to immediately send a letter to these same pharmaceutical companies requesting that they:

1. Prioritize the production of the preservative-free form of methotrexate.

2. Consider working with the FDA to import preservative-free methotrexate if sources are available.

Contact your Representatives here , and your members of Senate here.

To read more about this issue, please see People Against Childhood Cancer.

Thank you for your concern and your action.

Rally On!

Dai H. Chung, M.D. Dean Crowe
Chair, Rally Foundation for Childhood Cancer Research Rally Foundation for
Medical Advisory Board Childhood Cancer Research
Professor and Chairman, Department of Pediatric Surgery CEO and Founder
Professor, Department of Cancer Biology
Monroe Carell Jr. Children’s Hospital at Vanderbilt

Meet Rally Kid Mia, ALL Fighter

Mia was diagnosed with High Risk Acute Lymphocytic Leukemia (ALL) on 3/13/3009 at age 2. She was sent immediately to Seattle Children’s Hospital, where they began treatment. This was only the beginning for Mia and her family. Mia and her family spent most of 2009 living in Seattle away from home and away from Mia’s best friend and biggest supporter, Noah, the best twin brother a girl could ask for.

Mia is now 4 1/2 years old and has been fighting cancer for over half of her life. She was in remission until Christmas 2010, when she went in for a routine chemotherapy appointment to find out the unthinkable. After almost 2 years of chemotherapy, and only 6 months out from finishing treatment, Mia had relapsed. She was again hospitalized, and endured chemotherapy, radiation, and a stem cell transplant. Her twin brother Noah was a perfect match and was her stem cell donor.

Mia was preparing to go home after her stem cell transplant when her family received the news that Mia had relapsed yet again. Mia is truly in the fight of her life.

Mia’s parents are so proud of her for being brave and strong throughout her treatment, and so proud of Noah for being a loving and supportive twin brother. They say “It’s absolutely amazing the strength of a child and the beautiful connection these kids share. Mia loves dancing, listening to music, art and is an incredible athlete. Mia is a hero and reminds us that everyday is a gift – enjoy life!”