Take a second to open this link and vote for Project A - Dr. Sholler. Then share the info on your facebook page, personal blog, via email, etc...
LilliesFriends
You decide means just that, YOU DECIDE. You, Lillie’s Friends, will decide which research project Lillie’s Friends Foundation will fund.
Thank you!
Somehow, the holidays have turned into a season of stress, traffic jams, and shopping lists.
And when it's all over, many of us are left with presents to return, looming debt that will take months to pay off, and this empty feeling of missed purpose. Is this what we really want?
We like gifts. Our kids and spouses really like gifts. But consider this: America spends an average of $450 billion a year every holiday season. What if some of that money that we spend on gifts we don't really want and don't really need, what if that money also went straight to cutting-edge research and clinical trials for kids battling cancer (like neuroblastoma) for which they have no current hope for a cure?
You can find great gifts and support pediatric cancer research and clinical trials that take place right here in San Diego but also around the country, when you visit and place a bid for an item at MaxsGarageSale.com. It's an eBay Giving Works program that we are a part of, and the concept is simple. Bid on an item, and 100% of the winning bid goes to Max's Ring of Fire, Inc., and 100% of the income we receive from donations goes to fund research and clinical trials. Not a single penny that Max's Ring of Fire collects is spent on marketing, web hosting, salaries, travel, meetings, cost of fundraisers, etc. eBay allows for anywhere from 10-100% of the final winning bid to go to the charity but all the items at Max's Garage Sale were donated to Max's Ring of Fire, and so we can control the percentage, and that percentage is 100%.
Here's just an example of what's up for auction right now.
Max’s Ring of Fire had a great Sunday afternoon meeting with some of the volunteers who are going to help us achieve our goals in 2010. Our mission is to help find a cure for neuroblastoma through awareness and funding for cutting-edge research, and by empowering patients, families and doctors in their fight against this common yet overlooked cancer. Just as there is no donation too small, the same goes for volunteering. We need help on all levels to reach our goals. Anything you bring to the table is more than we have without you!
Max's Ring of Fire volunteer party November 2009
If you would like to get involved, please send an email to info @maxsringoffire.org and we’ll reply with an invite to our Max’s Ring of Fire Group on Google (check your spam folders!). There, you will find all the volunteer sign-up sheets and documents that were distributed during yesterday’s meeting, and can communicate securely and easily to the group in one place.
Please contact us with any questions or comments and please feel comfortable being open and candid with us. We appreciate and respect your input.
Please join us at our home on Sunday, Nov 15 from 1:00-3:00pm and get involved with Max’s Ring of Fire. We’ll have background information o you know what we’re doing, including an update on neuroblastoma research and an exciting new clinical trials consortium that includes our own Rady Children’s Hospital. We'll also be including "how can I help?" pack with tips, ideas and specific needs and roles that need volunteers to fill them. Kids will be taken care of so don’t hesitate to bring them along too. Let us know if you’re coming so we can arrange for the right amount of food, drink and childcare.
We do hope that all the friends who have been MROF volunteers in the past, and those of you who might want to become a MROF volunteer will be able to come. We look forward to seeing and meeting you, and hoping to widen the ring-of-fire that Max ignited!
When Max relapsed we felt it important to help his fellow classmates keep up with what was going on, and attempt to tell Max's story from a 5/6 year-old's perspective. We called this blog "Max's Kid-Friendly Blog" and it didn't include any of the occasional complicated, dark posts that were meant for older audiences on this blog. About October 2007 we stopped updating Max's Kid-Friendly Blog; it just became complicated to keep going. At some point before or right after Max died, I rejiggered the entire blog to move it from an active treatment mode to a mourning and remembrance mode. At the time, I didn't even know if we would continue posting or just let the blog remain as it was. In my rejiggering, I removed the link to Max's Kid Friendly Blog, and have recently revisited the site and thought I'd simply share it here in case you never saw it in the first place - there are many great adventures from our glorious summer of 2007 described in much greater detail than on this blog.
http://maxmikulak.blogspot.com
Tonight is Halloween. Thus begins the "sucky season" which ends January 1. This year, Hannah is a belly dancer/girl-genie (Lord, help me, I have a tween girl), while Nicky is going to be a pirate. Max (Bruce the shark) will join us tonight of course.
October 31, 2003. Hannah the butterfly and Max the alligator. This was our first Halloween in our current house.
Yesterday, 5 years ago, we began the journey that changed our lives forever. Max checked in to Children's Hospital with what was eventually diagnosed as Stage IV, high-risk neuroblastoma.
Sorry for the lack of substantive updates lately. Neither of us really have a good excuse like, "we were building homes in Tijuana," or, "lobbying Congress for more neuroblastoma funding." Truth is, we've been doing nothing. Not really. We've been busy, really busy. Not busy really doing anything worthy of a blog post however, at least not on a regular basis. I think we're hitting a new phase of mourning.
I haven't read any mourning books so this won't sound very credible but I think we've entered the "holy sh*t this is for real and Max really is gone and we can feel it deep within our bones every minute of every day" period of mourning. On the surface, I think some - maybe most of the people we see on a regular basis - believe we're getting along just fine. And we are, on the surface. We have fun, we go out, we laugh.
We talk about Max. Or we don't.
We're over the "structured" part of mourning where we try to schedule/control how and where we integrate a Max moment into our family's experience.
It just happens. Or it doesn't.
We're not forgetting him, we're likely just becoming used to him being dead and not with us. Don't mistake this for being comfortable with him not being here.
I'm supremely comfortable not fighting cancer every day. It's nice not to have the proverbial gun to your child's head every day with all the stress and anxiety that brings on. But the topical relief of not having the stress of the fight, versus the deep, deep pain of not having him around, and knowing that we'll never see him again on this earth ever again, is much worse.
Three weekends ago I took Nicky to the Miramar Air Show. I hope I'm not pinning all my expectations and lost dreams from my relationship with Max on Nic - trying to have Nic be my stand-in for Max. If you start to see any pictures in this blog of Nicky standing at the top of a skateboard ramp while Tony Hawk does a hand plant in front of him, please email me and tell me to stop. So, back to the air show.
Walking around the tarmac I came across a familiar looking bi-plane. Anyone remember this?
It's the airplane on the left from Max's celebration of life. It was the last airplane owned by Steve McQueen (a Stearman). I felt it was a good sign from Max to come across this since I usually wander around the more exotic airplanes at a show like this.
Nicky has also taken to demonstrating his disapproval in a most obvious manner. I think he didn't like that I wanted to take his picture by the landing gear of this C-5 Galaxy.
Here's another photo with the same pose so that you know I'm not making this up...
Rather than watch the planes Nicky liked to walk through the static displays and most of all, he liked the "army guy" tanks and guns. This is a howitzer of some sort that impressed Nic.
This past Saturday we went and got our pumpkins to the east of us at Bates Nut Farm, or as we have started calling it (thanks to Leo), "Nates Butt Farm" which the kids enjoy for obvious reasons. Yes, we are high-brow in our household. Being that it was a sea of orange at the farm, it was hard not to think about Max (or Macs).
We brought "Max" along with us (in the form of his trusty Bruce shark). I'm sure people think I'm weird carrying around a stuffed animal in the middle of the day, but then I've also shaved my head and people are giving me a wide berth these days anyway so...
I've been thinking a lot lately about our trip to Disneyland last August when Max was really sick and not really in the proper condition for an all-out attack on the Magic Kingdom. The picture below was from our second night I believe when Melis took Hannah and Nicky to see the Fantasmic show that our friends Lisa and Lance got us in to see (from the producer's stand no-less where you are right up in the action)... Max had no desire to go and so he and I were going to hang out in the hotel room, but I persuaded him to visit the Lego store in Downtown Disney for a little side trip. He ended up walking the whole way to the store and back. Coming back he was shuffling away with so much energy, so happy to have procured yet another Star Wars Lego set.
Max kept on saying, in his magical sing-songy voice, "this is the happiest day of my life," and I was almost crying as I knew there weren't likely many more moments like this to have with him.
Miss you...
Two in one day.
While picking up Hannah from school today, one of her friends came to me with two kid-tattered envelopes filled with $22.55.
Cheyenne, or Shiny as everyone calls her, held two lemonade stands this summer to raise money for Max's Ring of Fire. Her little brother, Tristan (aka T-Dog), became friends with Max when the boys were three and she and Hannah were in Kindergarten together. We had lots of playdates with those two kids, and Hannah went home regularly with Shiny after school when Max was in the hospital. A very kind family raising very kind and compassionate children.
Thank you, Shiny. You are a bright light in this sometimes dark world. Keep shining.
During the summer in our neighborhood we have free evening concerts every Sunday night. Hundreds of families come with their picnic dinners, chairs, frisbees and soccer balls. The music is loud and fun, and a good time is had by all.
This summer, one of Max's friends decided to pack his wagon full of lemonade, water and goodies and sell them blanket-to-blanket at two of the concerts. We received this note from him:
This $15 is for Max's Ring of Fire from my fundraisers. Thank you, JackMax thought Jack was the coolest kid in school. Jack was a little bigger than the other kids and super-sports guy. He could play everything - and was good at everything, too. Max I think, looked at Jack with perhaps a little envy at his abilities, but also lived through him while watching him play.
Our thanks to you Jack for bringing a smile to Max's face and to ours.
Last night I had a hard time falling asleep. The last picture to pop up on the computer as I headed upstairs was of Max with his curly blond hair, smiling with a cute hat on his head.
As I lay in bed the hole in my heart seemed so large and I wondered if it would ever shrink. I thought back to when I was pregnant with Hannah, our 1st child. She came into our lives and my heart swelled so much that I thought it might explode. It was so full and ever expanding with everything little thing she did. When we became pregnant with Max, I worried like crazy that I would not be able to love another child as much as I did Hannah. How could there ever be enough room in my heart for another? Max came, and my heart swelled again. It simply grows and grows. There's no making room for another in your heart. Your heart grows. By the time we had Nicky I understood and didn't worry at all.
Then Max had to go. And my heart didn't shrink. There's a hole in it. It's an ache, an empty place in my being.
Nicky turned four today. Yesterday evening - Saturday - he had a party at JW Tumbles with some of his new buddies from preschool. Thank you everyone who came out to the party!
JW Tumbles is one of those local neighborhood kid gyms like a Gymboree, and it is where Max had his fifth birthday party, right before he started Kindergarten. It was in "long hair Max" days and he had a blast.
And Nicky wasn't even one yet...
We hadn't been back since, so it was another one of those "memory moments" when a flood of good/sad emotions hit at the same time.
This isn't so much a story about what happened during the party but more about what happened after...
After most of the guest had left JW Tumbles and we were loading up the car with leftover food, cake, Nic's presents, etc. Nic had his bunch of balloons that all the birthday kids get...
Nic must have got an idea...
Because he grabbed his Auntie Randee...
And told her that he needed to release the balloons...
So that Max could have them in heaven.
Happy Birthday Nicky. We love you! Max is surely smiling down on you today!
Today I'm taking off work to just "be" on this first anniversary of Max's passing. I won't fool you, I have nothing profound to say today. No magical insight. No message of hope and better days ahead. The process of grieving is unique to each of us, but it all follows somewhat similar paths.
Since joining this "most exclusive club that no one wants to belong to" 365 days ago, I've become a sort of connoisseur of other angel parent's blogs that are either ahead or behind me in the grieving process. For lack of something to say here myself, I'm going to highlight some of my favorite entries/efforts here. Check them out if you can. Or save them for viewing later. They all hold inspiration, truth and hope in their words and pictures.
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The very personal (and moving) story surrounding the death and cremation of their child, Lucas, who passed away from neuroblastoma on 10/16/07.
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Coming from Leigh Saxon, who along with her husband Terrill and brothers Jack and Whit, lost their Paul to neuroblastoma on 7/14/07, what it's like to continue to function "normally" while dealing with the loss of a child.
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The Dolling family lost their Spencer on 5/21/08. More than any other family I've known (even if only virtually), they epitomize Living Life to the Max. Here is the blog post they wrote a few weeks before Spencer died. And here is their latest adventure.
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Erin passed away less than six months ago on 4/9/09. Erin's mom Vickie Buenger, who raised probably one of the female gender's best hopes for President of the United States, introduced a US Congressman and friend of Erin's at a recent town hall meeting on health care. This is what she said.
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So many other NB angel parents remain in the fight, but perhaps aren't the most wordy of bloggers like myself. But I want to take a moment on this day, the day before Childhood Cancer Awareness month begins, to acknowledge them and their efforts. It would be easy for them and for Melissa and me, to just walk away from the whole dang thing and simply live. To be honest, some may think that we are simply grieving by continuing to fight for a cure.... that this is therapeutic for us. I wish it were that simple. Believe me, sometimes it is, and sometimes it isn't. There are only 24 hours in a day. Most all angel parents are still parents to other kids that need time, attention, love, and a roof over their head. This work takes away from hobbies, vacations, and families. It is not without reward, but it is not without costs either. To these angel parents, I say simply, "thank you."
Intend on having a very MAX weekend... Conan O'Brien, whom we never stay up to watch, started the weekend out just right...
Just saw Nigel Marven on the Tonight Show. Came out with a Monitor Lizard, Nigel bleeding from neck where the beast had scratched him on the way out. The Monitor lizard was a Max favorite as they ate "wilderbeets". Max used to watch DVD's from the playroom featuring Nigel in prehistoric times. Favorite show ever as there was real person interacting with the dinos.
Tears and smiles. So many memories.
Dear Friends and Fans, Supporters and Sponsors:
It is with some sadness that we have made the difficult decision to cancel Maxapalooza. We arrived at our decision over the past 48 hours after much analysis, discussion and reflection amongst ourselves, our organizing committee, and top sponsors.
Simply put, Maxapalooza was going to be an amazing event experience, but the projected revenue from attendance and donations, even with corporate sponsors helping to cover some of the costs of producing the event, was not enough. The last thing we wanted to do was create a great event which raised no money for pediatric cancer research.
If you purchased a ticket, the full price of your tickets will be refunded to you. Look for an email from either PayPal or Google Checkout to serve as confirmation of your refund.
Max's Ring of Fire remains as committed as ever to our mission of helping fund important research to find a cure for neuroblastoma. Our mission and commitment to it remain unchanged. You can keep up-to-date on what we'll be doing next by visiting us at MaxsRingOfFire.org or by becoming a fan of MROF on Facebook.
If you have any questions or concerns, or would simply like to talk to us further about our decision and the factors involved, please don't hesitate to e-mail us or call: 858-342-1432.
With hope for a cure,
Melissa & Andy Mikulak, Max's mom and dad and
founders, Max's Ring of Fire, Inc.
Hannah starts school in one week. 5th grade. Nicky will be going to pre-K (4 yr old preschool) this year. Max has been gone for almost a whole year.
I’m not sure when the feeling of loss is supposed to get easier, but lately it’s been so intense. The numbness that had hold of me for so long is completely gone. What’s really sad is that Max not being here is not so blaringly obvious. So when it hits it hurts all the more. Almost guilt-like for not being more aware. Hard to explain.
Nicky’s been doing lot of little things that remind me of Max. Actions, movements, sayings. It feels good to see a little bit of Max come out of him, but it makes me cry just the same. As Nicky grows up he’ll surpass Max’s ‘forever seven’ and then there’ll be nothing to imitate. Every night at bedtime he still has the same routine: read a story in Max’s bed, sing a song, then talk about Max. Nicky is so lonely for a boy to play with. He came to me this morning when he woke up and sadly said, “Mommy, I don’t have any friends.” I almost cried, because it’s true and it’s my fault. How could I have let the entire summer go by without setting up one single playdate for my son? He needs a boy companion so badly and I’ve done nothing but fail him.
Hannah is still “skip-to-maloo.” We check in with her all the time, but she seems just fine. She never brings Max up in a conversation, but always partakes when he’s talked about. I wonder if her ability to cope has something to do with sleeping in their room every night, with all the planes, Max’s bed, his cloths in the closet and dresser… she doesn’t want any of it moved or tampered with. Two weeks ago she had run out of underwear, so she reached in his underwear drawer, pulled out a pair of spiderman tighty-whitey’s and was all set. Hannah is an amazing child.
For vacation this summer we finally made it back to Legoland. Max’s last trip was with Andy and his best friend Luke. Andy couldn’t bear to go there for along time. We all had fun and remembered all of Max’s favorite rides and exhibits. It was a good day for all of us. Then we flew to the destination for all southern Californian’s trying to escape the beaches, waves and sand: South Dakota. ;-) My mom’s family reunion. We stayed in a beautiful cabin on a lake for a week. Hannah & Nicky fished from the shore and docks (not even a nibble, but that didn’t seem to deter them). We bought fireworks, made smore’s, drove through swarms of huge mosquitoes, played in my cousin Mark’s bait barn (whole essay required to explain this to anyone not from the Midwest)… and Andy and I missed our second child.
The bridge that was Max is still sorely missed in our house. 
Hannah and Nicky just don’t have a connection without him it seems. Hannah is so pre-teen and Nicky is just a little boy who doesn’t understand why his sister doesn’t want to play with him all the time. (Again, this makes me hit myself in the head because I sucked 100% at getting Nicky a friend.)
There is a lot of pain in our house. Andy and I are stinging from the loss of Max.
If any of our readers is located - or has friends - in Charlottesville, NC - we invite you to attend this fundraiser hosted by one of our NB Alliance partners, the Ishan Gala Foundation.
Splash for a Cure: Family Fun for a Cause in Charlottesville, VA
Charlottesville Couple Honor Son with First Annual Fundraiser for the Ishan Gala Foundation, Raising Money to Fight Deadly Childhood Cancer, Neuroblastoma
Say goodbye to summer with slip sliding fun, live music by Alex Mejias, great food and fabulous prizes at the first ever Splash for a Cure event at the ACAC Waterpark on August 29 from 5-9 PM. more...
As you can probably tell by the image and title of the post, this is the official announcement of Maxapalooza. Melissa has been working day and night to pull this together and we have been wanting to wait for the headliner band to be found and signed and this just happened on Friday (while we were at Legoland with the kids on a "surprise visit" no less). We have signed The English Beat (with Dave Wakeling and Ranking Roger for all those who remember) and are happy with the outcome. We looked at a lot of bands and The English Beat were very accommodating and easy-to-work-with, a big plus since this is our first event and are still learning.
So, what's all this for? Where does the money raised go? It goes to fund an innovative neuroblastoma (and it's close cousin medulloblastoma) research consortium headed by Dr. Giselle Sholler and HQ'd at the University of Vermont/Vermont Cancer Center. Most of you know Dr. Sholler from our blog so I won't go into much detail here. Here is a PDF describing how your money is used to help save kids from this common yet overlooked cancer. However, I also wanted to let you read a letter from another angel parent, Bob Piniewski who started an effort called People Against Childhood Cancer or PAC2. The context of the letter doesn't matter here. What does matter is his message, which he has graciously allowed me to use on Maxapalooza.com (thanks Bob) and which I include here as well:
Childhood cancer is considered "rare". Rare has two meanings in this case: Happening to your child or someone else’s. One in 300 children will be diagnosed with cancer before age 20. That’s 46 kids every school day. 12,500 diagnosed every year. 3,000 kids, or 1 in 4 or 5 will not survive. It is the #1 killer disease of our children today, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Each year 35-40,000 are in treatment. Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year! Does that sound RARE?
Right now, two major fundraising organizations for childhood cancer research are St. Baldrick's Foundation and Alex's Lemonade Stand. They rely on parents to shave their heads or sell lemonade to raise money for childhood cancer research. To save the lives of the children being raised in the richest nation on earth. Think about that.
And the medical industry even agrees! And write about it! (Cure Today – Picking up the Pace - Igniting progress in the cure of children with cancer)
To paraphrase - “we must enlist friends and families of children with cancer to secure funding for research.”
What?
While it sounds like a bad comedy, it is a national tragedy. What are the last 2 national tragedies? When the shuttle went down, did we ask the astronauts families to figure out the problem with the O-rings? After 9/11 did we ask the victims’ families to "help us out with this war thing?" Yet it's our approach for dealing with the #1 killer disease of our children today!
And don’t believe that research into adult cancers is transferred to our kids. Right now the treatments are “down-sized” adult doses. And the results? 60% of survivors develop secondary cancers, infertility, major organ damage, developmental problems or other issues.
We are so grateful for those that have helped us get where we are, and will be there to help make sure Maxapalooza is a success. As you may have noticed, Maxapalooza is much more than an ordinary fundraising event that just so happens to be raising money to fund neuroblastoma research. In a way, it's a living tribute to Max. Which makes it difficult at times to "settle" for things - it also likely makes us difficult to work with but luckily we have surrounded ourselves with fantastic people who like us, are inspired by Max and what he represented and so work on our behalf in a way that is consistent with our beliefs and desired outcomes. Some of those people include Leo Benevidez at YMI, Chris at Grind for Life, Grant at Sport About, Elizabeth Wainwright-Alkhas, and Craig and Nelson at Premier Jet. Also some the committee making this all happen and supporting Melissa including Alessandra, Andrea, Kristi, Lisa, Lori, and Marcina & Neil, and Randee. Thank you so much - all of you - for your help and support in getting us where we are today! There's much more to do, it's just started, but without your help Maxapalooza would have never even gotten off the ground.
Tomorrow, we leave on a little vacation. It's nothing extravagent. We're going back to South Dakota to visit with Melissa's family. We'll be saying on a lake the whole week, the kids will have a blast fishin' swimmin' & boatin', and hopefully Melis and I can slow down for a few days to catch our breath. We also are planning on meeting Donna Ludwinski (mom to Erik: 23 and still kicking NB's ass) and whatever of her clan are able to make it to Minneapolis to attend an NB fundraiser.
This summer - as I presume all summers will be - has been tough. Bookending the start and end of summer are Max's birthday (June 30) and his angel day (August 31). With "the year" mark approaching rapidly, I cannot believe it has been this long that we have been without our perfect little boy. Each day, I find myself missing more and more of him and what I would give to have him back if only for one more day.
Wow.
http://superryan.blogspot.com/2009/07/missy-is-holding-one-of-her-babies.html
Not much else to say. Missy Morgan passed away on Wednesday from breast cancer. Her son Ryan passed away yesterday from neuroblastoma.
My Melissa wrote the following on Thursday night but never posted it:
Today I'm reminded that there is pain in this world greater than my own, which at times seems impossible. If you've never followed along on SuperRyan's journey through NB as his mother battled breast cancer... well... then you don't know pain. Ryan's been in the fight since 2004 and, like my Max, he has unfortunately not been able to find the cure and is home now simply battling the pain. Both he and his mom, Missy, are on home pain care. Last night his mom, Missy, passed away. How much pain can a family be expected to endure? All at once?
My favorite memory of Ryan, though I never got the privilege to meet him in person, is a picture of him standing amongst some Hooters girls with a "I am getting away with something here and I know it" smirk on his face.
I don't have a single favorite memory of Missy. I have many. She was one of the several NB moms whose unsolicited advice and encouragement I was always happy to receive. Here are some of the emails and blog comments Missy wrote to us over the years.
what a beautiful face, a beautiful spirit. We think of you everyday and pray for your strength.
Missy Morgan
Just wanted you guys to know you have been on my mind. It is so painful to think of how much you must miss Max. I wish there were someway to relieve that. We are praying for you to be able to stay as strong today as you have been the last three years.
Love, Missy
Hi Andy and Melis, Just checking on you guys this morning. Max is getting the same chemo as Ryan and they let us do it all at home. The visiting nurse comes the first day and accesses his port. sometimes she brings the irinotecan with her and sometimes they deliver it separately. anyway, it comes in 5 bulbs, one for each day and we keep it in the fridge. I don't know the physics of the bulb, but we just hook it up to his line and it pumps in over an hour. his temodar is oral, which I think it always is. you might ask if ya'll could do the same so Max doesn't have to go to the clinc. I know they have one more kid doing this here at CHOA. We are praying for ya'll.
Have a great Sunday,
Missy Morgan
Hi Andy and Melis, the new pics of Max getting accessed just broke my heart. I'm sure you're not short on suggestions, and I hesitate to make one, but-- If Max is only having a blood draw could he just have an arm stick? Ryan always prefers this to accessing his port. As a matter of fact, a week ago at the clinic he insisted on a finger stick, and our poor nurse just pumped and pumped his finger to get enough. Ryan's platelets are slow to respond, too and I have had the same sorts of things on my mind as well. I hope you will post the answers you get from your docs. we are praying his catecholomines drop and he gets a break. take care-
Missy Morgan
(superryan's mommy)
Our son, Ryan, just started the irinotecan and temodar. We go to the clinic the first day and a nurse comes out the next four to give it to him at home. He did great with that. It only works because he doesn't need all the hydration that usually comes with the chemo. The iri. only runs an hour and the tem. is oral. Could that work for ya'll so Max doesn't have to go to the clinic? Also, Ryan does better when he starts with an empty stomach. He had no nausea on those days. Good luck with it!
Missy Morgan
Today was a difficult day. Surely the hardest to bear since Max passed away ten months ago. Which seems like only yesterday.
Tuesday is Max's birthday. Max's Cub Scout troop will salute him with a multi-rocket launch, then hi-tail it out of there and head over to the picnic. Here are the specifics:
Monday night we will continue our birthday celebration/remembrance of Max with Wii night at our house, 6:00-8:00pm.
We have two TV's and two Wii's so far (but only four controllers). If you're coming to play, bring along any Wii accessories you're comfortable sharing (and a TV if you're really adventurous!). For games we have mario kart, star wars, indiana jones, Wii sports, and ww2 flying aces.
We'll be set up in the garage. Bring lawn chairs. Email me if you have questions -- cureNB(at)gmail(dot)com. Hope to see you!
Every mother's nightmare; every father's dream: Their 3-yr-old son wearing a Lucha Libre mask.
Out of all the cr*p Nic had his pick of at the SD County Fair, this is what he saw upon entering the fair and he held fast throughout. So when we exited, he picked out his favorite design.
Without Nic to remind us that there is a life to live even though Max isn't here any longer, I sometimes wonder what I would do.
Max's birthday is fast approaching... June 30.
From Austin Melgar's blog we saw that his family had planned a whole week of events to celebrate Austin for his birthday. We loved the idea, and decided to adapt their idea for Max's birthday, albeit abridged to four days of fun Max's style. Our plan is to do activities as a family that Max loved to do, and as Max would've liked, invite his friends and extended family to join us and Live Life to the Max!
We are nailing down the specifics on everything, but here is a loose look at our plans, so you can set aside time to join us if possible...
If you purchased tickets for the June 27th train ride in Campo, it's been cancelled! I just found out - and not because they contacted me with the news. "Due to circumstances beyond our control, all Museum rail excursions on the railroad mainline have been temporally canceled." Bummer!
You can email them support@sdrm.org for ticket refunds.
Andy & I are just about ready to post our plans for Max's birthday week, so check back here frequently. We'd love to have you join us at one or all. (We are figuring out what to replace this train ride with!)
Nicky & Daddy in the back of the "small" dump truck.
The next two weeks will be very busy indeed. Tomorrow, I fly to Vermont for the Developments in Neuroblastoma Research Symposium, where I am giving the welcome. I'll speak briefly about Max - reminding everyone in the audience the ultimate purpose of why we're all assembled in that one auditorium together - and then give a message about the power of collaboration and what can happen when parents get involved. It will be the first time I've had to speak about Max in front of a large audience since his death. I hope I hold it together. The symposium itself should be very good, with Nai-Kong Cheung from Memorial Sloan Kettering Cancer Center (MSKCC) the keynote speaker. Cheung and MSKCC developed an antibody therapy for use in neuroblastoma called 3F8 that uses mouse-derived antibodies to target a receptor on a neuroblastoma cell. When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient's own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient's immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them.
Max's doctor from Children's San Diego - Dr. Roberts - will be at the sumposium as well, as part of the new Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) that includes San Diego, St. Louis, MDAnderson (Houston) and Vermont hospitals. Also very exciting is that I got Gilles Frydman to moderate the final panel of the day, on therapeutic decision-making. Gilles is somewhat of a rock-star in the cancer/patient advocacy world. He started ACOR, which is one of the oldest online disease communities, and the largest online cancer community. ACOR is where NB parents connect online to share advice, provide support, and learn about new treatments.
Also great to hear is that many other parents and parent-foundations will be at the symposium, including parents from Ishan Gala Foundation, Friends of Will, Band of Parents, MagicWater, Grace Oughton Cancer Foundation, and others. It is through the combination of all our efforts that we will find a cure for neuroblastoma sooner. Just to let everyone know, these parents - myself included - take valuable vacation days from our day jobs, and spend our own personal money (not their foundation's), to attend events like the Vermont Symposium.
I mention how money is used, as on the 31st of this month (Melis' birthday in case you're keeping track) is Max's Ring of Fire's first fundraiser called Touch A Truck.We hope to raise $10,000 for Dr. Sholler's neuroblastoma research program at UVM with this event. We're well on our way with over $1,000 in tickets already purchased, but still have a ways to go. If you are planning on going, it would be great if you buy your tickets in advance as this helps us know how many people will be coming. And if you're not coming, why not buy a ticket anyway? We're inviting all the families actively being treated at Children's Hospital San Diego free of charge, many who otherwise might not be able to afford the ticket price, so sponsor a family today if you can!
Max in Vermont at the ECHO Science Center, Jan 2007 during hopeful times.
Del Mar Lifeguards truck & boat
2 Harley Trikes++$25 per family$15 per family for active military w/ ID$25 per group in uniform: girl scout troops, boy scout dens, indian guide tribesBuy your tickets online at
www.MaxsRingOfFire.org
or at the entrance on the day of the event.
Cash or check only please at the event.
To download a flyer to help us spread the word about this awesome event, click here. Post it in your local coffee shop, community boards, pass it out at your school!If you have a special vehicle that you would like to share with kids, please download our Participation form and return it ASAP. We would LoVe to have you participate!
The Party Game Truck
Winston Cup Nascar
An email newsletter was sent out last night to our small but growing number of people who have signed up to receive email updates from Max's Ring of Fire - to view the newsletter you may click here. If you'd like to get your updates on Max's Ring of Fire via email, you can sign up here. Otherwise, if you're a "fan" of us on Facebook you'll get updates there - and if you're on Facebook but not a fan of Max's Ring of Fire yet, here's the link for that too. And we'll continue to post updates on our progress with Max's Ring of Fire here on Max's blog. Thanks to everyone for all your support.
Sunday - May 31, 20095951 Village Center Loop Road
San Diego, Ca 92130
Max at his Make-A-Wish August 2005 - Griffith Park LA
Saturday, June 27th
Xinxin passed away on January 10, 2009. Her mom posted this recently. No matter where you are in your life, what a friend of hers wrote below reaffirms what we all know is true. Make sure you click the link below to read the balance of her friend's wisdom.
Have you ever observed the behaviour of birds in the face of adversity?
For days and days they make their nests, sometimes gathering materials brought from far away
And when they have completed the nest and are ready to
lay eggs, the weather, or the work of humans, or some
animal, destroys it, and it falls to the ground, all that they
have done with so much effort
Do they stop? Continue the challenge here
The first likely female president of the United States (don't believe me? read this) passed away from neuroblastoma today at the much too much early age of 11. As any of you who followed Erin's story via her parent's blog, her bright face was what you saw in the dictionary when you looked up the term "full of life". She also happened to to have her picture featured when you looked up "smart", "savvy", "worldly", "fun", "amazing", and "crafty". I am not being overly dramatic when I say that our country and our world lost someone great today. You just knew Erin would do amazing things for society.
And we're worried about saving GM....
