Help our hero win his ongoing battle against life threatening cancer.
Max Spartacus Kleckner is a brave eight-year-old boy who has been fighting cancer since July 4, 2008 when he was just four-years old. Max was diagnosed with stage 4 rhabdomyosarcoma, an extremely rare and aggressive cancer that had spread from a tumor in his head to his bone marrow. He underwent a year of chemotherapy and radiation and continues to be treated with premium-grade immunotherapy and alternative medicines. Max enjoyed a magical normal kid year after treatment before the cancer relapsed. Max’s family strongly believes in healing the entire person, physically, spiritually and emotionally and—with the help of his friends, family and the Cardiff community — have showered Max with love, fun, and a stress-free environment. We banded together to support the Kleckner family once before, and we hope that you will join us again to help this brave little boy beat this cancer, once and for all!!!
We were presented with the options for Max yesterday and none of them are optimistic. The tumor has doubled in size and on either end is pushing on something vital, the pons on one side that controls basic bodily functions like telling your heart to beat and the Cortaid artery on the other side that provides blood to the brain. The pressure on the brainstem is what was causing the extreme headache and throwing up on Sunday. The high dose steroids have provided some temporary relief but for how long nobody knows.
Dr Crawford, neuro oncologist, had lined up the neuro surgical team to de-bulk Max’s tumor, but after seeing Max yesterday morning, seeing how happy, functioning and spirited he still is, he changed his mind. Surgery to de-bulk the tumor would only be a short term solution, so when you weigh the dangers and trauma against the outcome it just isn’t worth it. There is a 50/50 chance that Max would wake up from surgery and not be that functioning, spirited little boy that he is. There is also a huge risk of even surviving the surgery, the tumor is highly vascular. Radiation poses the same threats. It’s pretty much agreed that we need to enjoy our days with Max.
We put Max back on VAC, the original chemo protocol that he was on 4yrs ago. It’s probable that the residual tumor cells that regrew are resistant to VAC, but with no other viable options we decided to give it a try. The cumulative levels of Vincristine pose another huge risk to his central nervous system, but if the tumor shrinks a bit we can buy more time. In 3wks a phase1 clinical trial will open with a new drug called sonic hedgehog, the name alone seems fitting for Max so maybe it will be our miracle.
Posted on 8 May '12 by admin, under News. No Comments.
Hard to believe after seeing him Saturday, 3hrs of jumpy and games at his schools ice-cream social to total pain, throwing up and a crumpled sick little dude. After several hours in the ER, CAT scan, MRI and morphine, we learned that Max’s tumor has grown another 1cm, now over 3.7cm and putting severe pressure on his brain stem. In the ICU he was put on IV steroids to reduce swelling around the brain and give him some temporary relief. The surgeons and oncologists are gathering, they want to go in a debulk the tumor. Such a dangerous surgery for a temporary solution.
Today Max woke up with a smile on his face. I really needed it, his smile is what keeps me strong.
Posted on 7 May '12 by admin, under News. No Comments.
Just got the results of Max’s full body PET CT scan, still high activity in the tumor, 9 outta 10 on the radioactive sugar uptake. A little alarming but not sure what it means … that he has a tumor, duh … or does it mean that the tumor is still growing? No metastatic cancer, the rest of his body is clear, nice to have a little good news. No changes in treatment direction at this time. Max has adjusted well to the new treatment, minimal side effects. He has been feeling well the past few weeks so we are enjoying each day with him.
Posted on 30 April '12 by admin, under News. No Comments.
So many consults and so many strong opinions…….. “Absolutely radiate, you should blast the heck out of the entire area and obliterate the tumor”…..” In no certain terms can you re-radiate the brainstem, that would be irresponsible” ……”Radiation would be a last resort, surgery is your best option”…..”Surgery is far too risky, no one would operate in the cavernous sinus”….”Surgery and radiation should not be considered as they will cause a carotid hemorrhage and extensive cranial nerve damage”…… “One thing is for certain, chemo is not enough, the tumor will take the brainstem, and will then keep going”…. This last statement really hit home.
Years ago, sitting in the house of horrors (AKA the oncology ward), watching all those poor children that have been beaten down by cancer, have had physical and mental losses from surgeries, radiation and chemo, getting poked, poisoned and tortured as a daily routine - Mark and I both agreed that we wouldn’t take it that far with Max. Today that decision is knocking on our door, how can a parent make such an impossible decision?
Max had another MRI today, his tumor is relatively the same size but with higher density which represents some growth. There isn’t room to grow, it 1mm from his carotid artery that supply’s blood to the brain. Max will be starting two new chemo drugs this week, a combination of drugs that has no published data. The individual drugs passed the FDA a few years ago for adult liver, kidney and pancreatic cancer clinical trials. The rat phase of Max’s treatment begins. Health insurance denied one of the drugs, $18,000/mo. After some negotiation they agreed to a 2mo trial.
The pain around Max’s eye has been much better, the new med Neurontin really seems to be working…phew…Im not sure how much more my heart could’ve taken. Max’s eye still doesn’t move and he still has double vision. How he continues to go to school, play tennis, baseball…his determination to enjoy life is beyond me. Max had a botox shot in his eyeball last week, just another torturous moment in his life. The intent was to counteract the damaged nerve that controls outward motion of the eye; so far it doesn’t seem to have worked. 
Max’s B day bash was out of this world and crazy fun. Our friends Dan and Chris rented a limo bus for the event. 45 of Max’s closest friends and families piled onto the luxury bus for an adventure not to be forgotten. First stop was laser tag; we had the entire arena to ourselves for an hour of fierce combat. Im not sure who enjoyed it more, kids or parents? Second stop was Dave and Busters for more games and prizes. On the bus ride home the kids busted out a big dance party with DJ Danielle, don’t forget Kyle upside down on the rail and Kimberly, don’t do what Kyle does. Fun was had by all.
Spring break is just a few days away. Go Spartacus!
Posted on 4 April '12 by admin, under News. No Comments.
We have a huge surprise birthday adventure planned for Max this Saturday that we are so looking forward to. Max was awarded the Dempsey award of courage at the Encinitas Little League again this year, he was so proud, it was so cute. A few weeks ago we went to Cabo for some much needed family time. Max was so happy and energetic, he ATV’d, parasailed, swam with dolphins, he wore us and his Omi out. Thanks Mike & Joe for letting us stay at your place. 
Max just had his 1mo out scans to see if the new chemo is working. The tumor growth seems have slowed down but unfortunately it did grow a few mm’s. The tumor is in his cavernous sinus pressing on cranial nerveVI that controls outer eye movement and is encroaching on his carotid artery and brain stem. He has also had some hemorrhaging by the tumor, probably from the chemo drug Avistan. Max is experiencing episodes of extreme pain behind his right eye, it is assumed to be nerve related so we are starting him on some new targeted pain meds that I really hope work. Watching him suffer is so difficult and tearing us all apart. As soon as the pain stops, he is off and ready to go. Distraction and friends still seem to be the best pain killer. Yikes that kid makes my heart hurt.
We are not sure what the next step is, his oncologist wants to try one more month on his current chemo (Temador and Irinotecan), minus the Avistan. Beyond this, the treatment therapies get very toxic and very experimental.
Posted on 9 March '12 by admin, under News. No Comments.
Its back, so horrible, the beast is back, the battle is back. The war never really ended, in our deepest darkest thoughts we knew it may return, but we held high hopes for a miracle. We needed more time, we needed a year with no hospital visits, no poison, just a normal family year.
Early this week Max’s eye started to bother him, he started to see double, his eye stopped moving over night, just like that. The hospital responded urgently and got him in for an MRI on Wed, by Wed night we received the news that his cancer had relapsed. Its back in the original site, ground zero, growing ~3cm up his optic nerve towards his cavernous sinus and towards his brain. The cavernous sinus is a small tunnel thru the skull that contains all the nerves that control facial movement, optic nerve and the carotid artery that supplies blood to the brain. It’s an inoperable area.
My research is back on in full force, we have been in touch with experts at the National Cancer Institute, MD Anderson and Children’s Hospital Los Angeles. Also with my Rhabdo research mail list with researchers and families around the globe. Looks like a new chemo regimen will start on Monday, one that appears to be fairly tolerable and less painful than the last. Its proven to have a good response, not necessarily a cure. It may or not be a cure for Max, but I feel optimistic that Max will live to fight another day, and in that other day, science will have found that miracle cure.
Mark and I took a day to regroup and solidify our strength. We plan to tackle this as we always have - to make sure that everyday is a good day for Max. The Kleck’s are ready to fight and ready to get back out there and enjoy life with all of our friends and family. Go Spartacus.
Posted on 3 February '12 by admin, under News. No Comments.
Posted on 3 January '12 by admin, under News. No Comments.
Max had a fantastic summer, we chose to do a staycation in gorgeous Cardiff by the Sea. Max went to Harry Potter camp, build it camp, volleyball camp, jr lifeguards and played with his buddies all summer long. We did some bike training this summer, funny the little things that you don’t master when you spend years in the hospital. We ended the summer with a 10mile ride, he was so proud of himself. He is doing really well, has some hair back on his head, grew a tad and is full of energy. 
Max has started 2nd grade this month and he absolutely loves it. Full schedule; school, soccer, tennis and swim team. Me, Ive been paying my dues at work, only 1 day off all summer and im ready for a big vacation. Hopefully Max’s Oct scans will be clear and then its off to Thailand to visit my Aunty Sharon. Mark is still the super fun dad, he is still keeping fit and I’ve loaded him up with home improvement projects. Fit? I don’t recall what that was like. 
Although we are trying to lead a normal life, cancer is still ever present in our daily lives. We still have the daily grind of administering 36 supplements, antibiotics and daily oral chemo to Max. We still spend 1 day a week at the hospital for IV chemo, labs and various dr appointments. We dread it; the pokes, the waiting, seeing all the kids suffering on the oncology ward and not to mention that we are still poisoning our son. Every time Max complains that his eye or jaw hurts, it fills me with fear of what might be within. There is a reason that they call it a cancer journey, it touches every part of your life, your family and your friends, and even with the best outcome, it is still without end.
Posted on 15 September '11 by admin, under News. No Comments.
The preliminary read on the scans are good, no visible cancer, but there is a lot of post surgical and radiation tissue damage that the surgeons need to review to be sure. The anxiety level was high last week but for now we can breathe again. Cancer continues to teach me to enjoy every moment with Max, to try and find that balance between work, family, friends and fun. 
We had a great vacation in Los Barrilles Mexico, so much fun in the sun. We are so grateful that our friends were able to join us and make it exponentially more fun. Now that its over its time to plan the next adventure. 
Max is two weeks into cycle 2 of maintenance chemo and doing fairly well. 10more days till summer vacation for Max. I wish I wish I wish…that I didn’t have to work, Id love to take 3months off with Max and do everything that our hearts desire. Ha, wouldn’t we all. On the bright side, I get to spend the summer at home in Cardiff By The Sea, one of the best places on earth.
Posted on 7 June '11 by admin, under News. No Comments.
Its been a month of ups and downs with Max’s health, the maintenance chemo has been way harder than we expected. After Max completed his relapse protocol he had a few weeks where his appetite came back and his strength and stamina really started to improve, it was so encouraging…..but alas, it was short lived. He started maintenance chemo in mid April and it has once again zapped his appetite and stamina. His blood counts are dropping lower than we had hoped and he has needed a lot of extra sleep. The daily chemo is hard to get down him and the process for the weekly IV push at the hospital takes about 5hrs. We are so done with the long days in the hospital!
Ok, so its not all bleak, most of the time, in true Max form, he is all go and he is having a blast. He joined the swim team, plays baseball, skateboards, plays tennis, takes piano lessons and has been able to attend 4 days a week at school.
We are getting very excited for Max’s long awaited vacation. We leave for east cape Cabo this Saturday. Snorkeling, Zip lines, ATVs, fishing, pool, 90deg days, volleyball, good friends, cervasa’s…and so much more await us. Yahoo!
Posted on 10 May '11 by admin, under News. No Comments.
