Maxi earned his angel wings on Dec 24th 2012

Max Spartacus Kleckner was a brave eight-year-old boy who fought cancer from July 4, 2008 when he was just four-years old to Dec 24, 2012. Max was diagnosed with stage 4 rhabdomyosarcoma, an extremely rare and aggressive cancer with a tumor in his head that spread to his bone marrow. Max underwent a year of chemotherapy and radiation and continued to be treated with premium-grade immunotherapy and alternative medicines. Max enjoyed a magical normal kid year after treatment before his cancer relapsed. Max went on to fight for 4 more years before earning his angel wings on Xmas Eve 2012.

Jan 12th. Tribute to Max

-Blue Skies Max, by Eric Blehm-
Our neighbor and friend—The Bravest Superhero—Max Spartacus Kleckner earned his angel wings on December 24th after four and a half years of battle with cancer. He was eight years old. We honored him yesterday at a local beach where he and his family played with our children and many in our community. I was honored to speak briefly and shared this photo of Max that my brother-in-law took on a gray stormy day two years ago at that beach, Max heading out for a surf, and reminding us with outstretched arms and utter stoke that no matter how gray and dark our days might be, there is blue sky above. That is what I’ll always remember when I think of this brave little warrior who lived for every moment. BLUE SKIES MAX!!! We love you… we’ll miss you, but you will not be forgotten.

- The Most Influential Person In My Life, by Haley Young (Max’s only cousin) -
The most influential person in my life happens to be an eight year old boy. Because of his age he isn’t expected to be the person to teach others about life and how you should go about it. But that is exactly what he did. He left a mark on everybody he met and he is someone that nobody will ever forget. He is the strongest person I have ever met and I wouldn’t expect a grown man to have gone through what he had to go through and still be a happy, smiling person as he did. Max and I had a bond that will never be broken. One of his first words was my nickname and whenever we were together we had endless amounts of  fun. Whenever it came time to have Thanksgiving, or Christmas dinner with the family I would get really excited because that meant I got to see Max. He was the first kid other than me in the family and I loved spending time with him.
Everything changed July 4th 2008 when Max was diagnosed with a very rare cancer. I will never forget that date because it took away my ability to keep him safe. He was only four years old when he was diagnosed and it was something that my family and I will never understand. Max was so young that he didn’t understand at first how sick he really was. We told him their were bad guys inside him, and he never hesitated to reassure us that it was okay, because he was a super hero, and super heroes always beat the bad guys.
Max went through thousands of hours of treatment with Chemo therapy, radiation, and surgery. It was hard for all of us to watch his strong little body change so quickly. Max went from a built little boy, to a very frail one, although he changed physically he was always the same outgoing and happy person. No matter how sick he was, or how much he was in pain, he never ceased to have a smile on his face, even when my family and I didn’t. He helped us through his sickness with his fighter mentality and nothing could stand in his way. Max went into remission twice over the years but the cancer always seemed to creep its way back into his life. This year however things took a turn for the worse.
The cancer started to spread to his spine and other parts of his body. There wasn’t much else the doctors could do and Max’s body was no longer helping him fight the battle. Our hope for him to bounce back as he usually did was fading. It came time that I was told that I needed to tell him goodbye, and I will never forget that moment. He couldn’t speak because he was so sick and they had him on a lot of morphine. As soon as he heard my voice he opened his eyes and looked around and then at me and then held my hand. I told him I loved him and I knew if he could say it back he would. That was the last time I got to see Max because he passed away a couple of days later. December 24, 2012 was the day that he was finally out of pain.
Although I would do anything to have Max come back,I know that would be a selfish act. He deserves to be out of pain and at peace. He is looking down on me wherever I go, and I have his necklace that he gave me that I wear every single day. If you look up into the sky, you’ll see Max, because he is the brightest star up there. I never thought that someone who was just eight years old could teach me so much about myself. He showed me what life was all about and that you have to make every situation you’re brought into, a positive one. Max will always be my favorite super hero.

N’dabele farewell from grandpa
Hamba kahle - abantwana madohta—– hapana kufara wena — pano Baba Madahla!
(good by) (man child) (there is no happiness without you) (from Old Father)

Posted on 6 January '13 by admin, under News. 41 Comments.

Dec 24th 2012 Maxi earned his angel wings

Max Spartacus Kleckner earned his angel wings on Christmas Eve. He fought valiantly for 4 1/2 years against the evil beast Rhabdo. He has filled so many hearts, he has lived larger in his short 8yrs than most can in a life time. He will be missed.

Posted on 27 December '12 by admin, under News. 40 Comments.

Dec 14th 2012 The Amazing Adventure

Max’s adventurous spirit soared in Belize. He dug deep and rallied for every adventure that the country had to offer. Cave tubing, zip lining, snorkeling, swimming, climbing pyramids, biking and of course no adventure is complete until you swim with sharks and jump on a stingray. He absolutely amazed me, it was so good to see him so happy and full of energy again.
 Max’s health has taken a decline since we’ve been home.  Whether he caught a nasty virus or is suffering from further cancer penetration into his brain and spine we cant be sure.   Yesterday we started Max on IV fluids, steroids and pain meds to make him more comfortable, he hasn’t been able to keep anything down for a few days now.    Hospice will be over tonight so that we can continue the IV meds for him at home.   If Max perks up in a few days we may be able to start him on a new drug Pazopanib, its not a cure but in a few cases it has delayed disease progression for a few months. 
Xmas is just a few weeks away, another occasion for us to look forward to celebrating with our little brave warrior.     

Posted on 13 December '12 by admin, under News. 47 Comments.

Nov 19. Thank You

I am so thankful for our incredible community. Thankful for all of those dinner and wine fairies that have been filling our home. For the Rancho SanDieguito swim team for holding an amazing fundraiser for Max. For all of Max’s buddies that come over and play with him. Most of all I am thankful that Maxi is feeling well today and excited for our Belize adventure. I hope that everyone has a wonderful Thanksgiving Holiday. Thank you all for being in my life. xox nat

Posted on 19 November '12 by admin, under News. 37 Comments.

Nov 8th 2012. Daily radiation grind is over

It was another busy month for the Klecks; me off to work ea morning and Mark and Max off for the daily dose of radiation.   The radiation definitely helped with Max’s pain and weakness, but everything is relative, if you haven’t seen Max in 6 weeks the difference is alarming.  His ability to walk is limited; he’s gone from a super skinny energetic kid to a steroid swollen and lethargic kid.  He still takes over a dozen pain meds a day and sometimes that isn’t enough. 
The radiation is over, the steroids are done and the next scans won’t be until the end of Nov.   We need to wait for a few weeks for the burning and swelling from radiation to go down before an MRI will be meaningful. 

For now Max is back to walking, smiling and laughing so its time to get back to enjoying our precious days.  We just booked flights to Belize next week, we are so excited for some adventure.  Go Spartacus!

Posted on 14 November '12 by admin, under News. 41 Comments.

Oct 10th 2012 Sonic Hedge Hog will have to wait

SHH finally arrived last Friday, 6weeks too late to be our miracle, at least for now.  Dr Crawford (neuro oncologist who has been leading the charge for SHH) pulled up the images of Max’s spine MRI last Friday morning; his head dropped and hit the desk.  The cancer has spread along the entire length of Max’s spine and into his brain.  The beast is in full force, to much for any single agent to handle so we have to go back to the big guns.  Max will start palliative care radiation to his entire spine, head and brain next week.   

Long term radiation side effects aren’t really a consideration anymore, we are just trying to stop the pain and give Max some more good days.  The short term side effects have risks but come with an expectation of some pain and symptom relief.   The biologics (chemo/SHH….) can be considered again at a later date.    

Max is back on steroids, eating non-stop and putting some chub on his skinny little body.  The cancer on Max’s spinal cord is causing him so many odd sensations, weakness, pain, issues swallowing and his left leg keeps giving out.  He has been so confused and emotional with his body parts going wacky, he has really had trouble leaving the security of home and mom and dad, not knowing what’s going to fail next.  

I went in for Surgery to replace my ACL a few hours after we saw Max’s images.  It couldn’t have been soon enough to put me under and out of my emotional torture.  The surgery went perfectly.  It will be a few weeks before I’m walking, but for now I have an entire week recovering on the couch, snugging with my MaximumPleasure.  Since stairs are not an option for me right now I am camped out on the couch, Max is right at my side and insists that he take care of his mommy.  He is so funny; I asked him for a few simple things, a glass of water, pass me my cell phone….. And Max exclaims “wow, I didn’t know this would be so much work” J  

Max continues to fly.  We took him to jump off a cliff, paragliding at Torrey pines. World record holder Max Marien,  374 infinity tumbles, took Max on flight of a life time.  He swooped and swirled off the cliffs of Torrey Pines.  Last year when Mark wanted to take Max paragliding it was an absolute “no way in hell are you jumping off a cliff with my baby”.  Now I watched with pride at my little super hero soaring in the sky.    

Posted on 11 October '12 by admin, under News. 39 Comments.

Oct 3rd 2012. Come on Sonic Hedge Hog

Max had another MRI today, this time for his spine and it did confirm that the cancer has spread and is now coating the top of his spine. Max has noticed odd numbing sensations and flashes of pain throughout his body.   His pain level is still manageable with some good drugs.  His appetite is good from the steroids however his energy is mostly gone.  He sleeps long hours, naps and then sits and watches TV or plays electronics most of the day.  He did get to school for a few hours yesterday and he was so happy. On Sat he played his first soccer game of the season, gave it his all and then slept all afternoon on the beach.  Nothing beats a great nap at the beach; cool ocean breeze and the lulling sound of the waves. 

The past few weeks have been especially difficult for Mark, I have had to work so many hours lately that he has had to bare the brunt of the long hours in the hospital and the long hours sitting at home with Max.   Now to make things worse, I go in for knee surgery tomorrow for a replacement ACL.  The only positive note is that during my recovery I can snug on the couch with Max all week.

I have had a tremendous amount of support, consultations and advice on treatment options from so many awesome doctors and scientists around the US.   The remaining options for Max are all phase 1 clinical trials, which typically mean first time on a human or a child.  So it’s basically a pick-em, quality of life will factor heavily in the decision.  The Sonic Hedge Hog drug is so close to being approved, if Max can hang in he will be the first patient to try it.  We are hoping it will be open next Thursday, it will be here at San Diego’s children’s hospital which is a big plus, under dr Crawford is another huge plus.  We aren’t sure how torturous the treatment is at this point and we certainly have no idea if it will work, but it just seems like its meant to be for Max.  We meet the oncology team again tomorrow to decide if in the meantime Max should get radiation on his spine to hold him over until next Thur.  yikes, more torture. 

Posted on 4 October '12 by admin, under News. 54 Comments.

Sept 27 Our Magical Summer has come to an end.

 Our magical summer has come to an end, the VAC chemo has stopped working, Max’s cancer has begun to grow again, this time spreading like threads from his tumor and travelling towards his spine. 

Posted on 27 September '12 by admin, under News. 40 Comments.

July 31, 2012. The tumor shrank…a lot!

While this should have been champagne worthy news, no celebrations for us, just a huge sense of relief to have some more time with Maxi, all the while we are constantly preparing ourselves for the next devastating ambush.   VAC chemo is not a cure for Max’s aggressive tumor, just a temporary and very toxic cocktail.
On May 8th we were presented with such grim options, urged to go home and enjoy our last days with our son, handed an end of life preparation package and arrangements were made with hospice.  In no way were we able to accept this fate so we desperately grasped at what little we know and asked if Max could go back on VAC, his original chemo protocol.  The oncology team didn’t think it would work, but to all their astonishment it has aggressively shrunk the tumor….at least for now.
Max is having a great summer and feels pretty good most days.  We kicked off summer with a camping weekend at Catalina Island, was such a blast with about 40 friends along.  Jeff, Angela & Bullet were rockstars for bringing the yacht and boat for all to play with.  Max has been able to put in a few days a week of summer camps.  He had a great summer opener with Greg at Eli Howard surf camp, charged it hard into the blue room (surf lingo that im not hip enough to decipher).  Then off to Harry Potter camp.  He and Syd had some loving on Muffin at equestrian camp.  I cant say that Max has survived survival camp, he’s not feeling very well this week.  Tatiana took Max to be a scientist for a day at Life Technologies.   Zoey, Sofia and Greyson bought Max a flight package for his Bday, he actually flew a plan, what 8yr old gets to do that, he loved it.

The stress is always with us, every little ache and pain stops my heart cold.  Max hasn’t rebounded from his last round of chemo as well as he usually does.  After 3 years of chemo his little body is so beaten up.  Its been12days since his last big chemo and his energy, appetite, endurance and enthusiasm are still very low.  Today I was called home from work because Max was having head and eye pain, the little bit of movement that he regained in his eye last month seems to be going away.  Im starting to freak out again, there is no plan B right now, no cure, only a few experimental drugs.

We always keep the calendar filled with fun things to look forward to, even if we can only pencil everything in.  Some more good days ahead, we are off to Santa Barbara on the train with buddies next weekend for  our annual volleyball party camp.  Live for the day, 4 years of living for the day, its exhausting but Max deserves the best.

Posted on 31 July '12 by admin, under News. 47 Comments.

June 7, 2012. My little half moon…his tumor appears to have shrunk a bit.

Max had an MRI last week and it appears that his tumor is a little smaller.  The vascular area diminished and is replaced with a smaller more solid looking chunk.  Whether this is from the steroid or being back on VAC its too soon to tell.  Max started another round of VAC chemo last week and we phased out the steroid.  The Sonic HedgeHog clinical trial is delayed with red tape at the FDA so hopefully it will be available to start in 1-2months.
Max has a chub-a-liscious left cheek, his hair is gone and he looks like a perfect bright and shiny half moon.  The high dose steroids sent his appetite threw the roof, it was so bazaar after years of trying to get him to eat to see him shoveling food in his mouth all day long.  Its good that he was able to put on some weight for this next battle.  The side effects of chemo are already taking its toll.  His  appetite gone, blood counts dropped, immune system gone, battling a fever all night; we are just hoping to avoid a week in the hospital on IV antibiotics.  If we can get thru this next couple of days he should be able to have a good week.

Over the past 3weeks we have spent most of our time adjusting the pain meds, steroids, chemo and stomach meds to try and keep Max stable and minimize the pain.  Considering all that’s going on he is doing really well, but it still breaks my heart to see him so mellow, not wanting to run around and play.   He’s pretty content to sit at home and play video games, read….and of course eat, eat eat.
Our village has been great as always.  The kids are all getting a little older now and know more about the consequences of cancer, they have all been so concerned and supportive of Max.  Never a day goes by without buddies checking in to see if Max needs a play date.  I’ve never known a kid to have so many “best” friends; he truly loves each and every one of them.

Posted on 7 June '12 by admin, under News. 31 Comments.