Tuesday, January 24, 2012

A Life Changing Event - Leukemia

Monday last we brought our son Joshua home from college. He was suffering flu-like symptoms and had a persistent nosebleed. We took him to our family doctor. He sent us to the local hospital after a blood test showing extremely high white cell and low platelet counts.

After a day full of tests Joshua was diagnosed on Tuesday evening with Acute T-cell Lymphoblastic Leukemia. He began chemotherapy on Wednesday and early Thursday morning his heart stopped, overwhelmed by the toxins created as the leukemia cells were destroyed by chemo. But the amazing doctors, nurses, and technicians in the intensive care unit brought him back.

It was the dramatic beginning of a very long week. Surprisingly, when the oncologist told us our son had leukemia I wasn't shocked. Somehow, in my heart I already knew - even before the blood test. The nose bleed was the give-away. The extent of his disease did surprise me. The cancer has invaded every part of his body: from brain, to spleen, to liver, to lymph nodes, to a mass in his chest.

I knew the diagnosis was a life changer. I knew nothing would ever be the same and our lives would be consumed in helping our son fight the disease. But when Joshua's heart stopped that morning my world crashed as well.

My son is twenty-one years old with three-and-a-half years of a 4.0 GPA toward a degree in philosophy. He is the most brilliant man I've ever met, and that isn't a father talking. His peers and professors agree. His first question when told the course of chemo was, "How will I go to class?" His oncologist informed him he would not be returning to school.

Joshua was devastated as much, I think, that he would not be graduating this semester as he was by the prospect of facing the impending battle with leukemia. My life is now focused like a laser on my son. Writing, publishing, and promoting my books seems trivial and honestly irrelevant.

My son, like many his age, has amassed a huge debt in college loans. Though helped by our insurance, Joshua faces the staggering cost of prolonged cancer treatment. He asked me in ICU how much all of this would cost. I told him it wouldn't cost a penny - just get well. But he knows better. We are a working class family. Joshua would have been the first person in my family to graduate college.

I am putting all the proceeds from sell of my books into a fund to pay for Joshua's treatment. I am also setting up a donation link on all of my websites that will go to that fund. Any donations beyond the cost of his treatment will go toward paying his student loans. He asked that anything beyond that go to leukemia research.

My son is facing his illness as he faces life - with strength, poise, and determination - though as his father I know he's scared. Twenty-one is a difficult age to face death - old enough to fully understand the possibility, but in many ways too young. I am proud and amazed by the man he has become.

If you would like to offer encouragement to Joshua you can post on his Facebook Wall. He is keeping up with his friends on his smart-phone and had me post updates while he was in ICU. He is currently continuing chemotherapy. If you can donate to help cover his treatment you can do so through PayPal - you don't need a PayPal account to donate. And as I said, all royalties from books purchased will also go into that account.

I obviously will not be spending much time on social media for awhile, but I truly appreciate all of my friends, fellow writers, and readers. Please leave me messages and I will respond when I can. Above all, we need your prayers.

We've witnessed a series of miracles already, from his acceptance to participate in a special clinical trial aimed at his particular cancer to a trauma doctor who was standing by when Joshua's heart stopped. That doctor immediately began CPR and continued until they lowered his potassium levels and got his heart beating again.

Joshua is determined to win this battle and return to school as soon as possible. As a family we are determined to stand with him in every way we can, and trust that God is there too - every step of the way.

Please stand with us.



73 comments:

  1. Max, I cannot tell you how heartbreaking this is to read. My heart bleeds for you and beats strong with you. I will keep you and your son in my constant thoughts. So much love and hope and light going in your direction.

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    1. Thanks, Gae. We're going to fight with everything we have. He's a strong man, and I know he can beat it. <3

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  2. Oh my god, Max. I'm praying for you.

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  3. My prayers are with you guys. What else can I even say? Feels like there should be more...Much love.

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  4. Max,
    You, Joshua, and your family are in my heart and my thoughts.

    You know my history. If there's anything I can offer Joshua, I will. He sounds like an amazing person with an incredible will and determination. That's a very powerful foundation, and one that cancer is going to have a hell of a time with. Tell him to stay strong, as I know you will be for him too.

    eden
    xoxoxoxoxox

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    1. Thanks, Eden. He's starting the second week of chemo tomorrow. Docs are being aggressive and Joshua is fighting it hard.

      xoxoxox

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  5. Max,
    My thoughts and prayers are with you, your son and the rest of your family as you all fight this nasty, nasty disease!

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  6. Love, prayers, thoughts, and I sent an email to my good friend Guy Magar who's wife Jacqui survived leukemia also -- @GuyMagar -- and he wrote a book about it called KISS ME QUICK BEFORE I SHOOT ( he's a director :). I'm sure he'll get in touch w/ you. He lives in LA.

    They did an experimental (at the time) stem cell treatment and it worked for her. I'll find out more. I have an email into him myself to get you two in touch.

    I'm on it, baby. Anything I can do!

    xxoo as always, fella.

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    1. Thanks, Rachel. As always, you are freakin' awesome!! But you know that, right?

      xoxox

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  7. I am so sad to read this. No parent should ever have to go through this, and neither should such a young and beloved child. Many blessings to your family and Joshua, Max. He has love, strength, and youth on his side. My thoughts are with all of you.

    xoxo

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    1. Dear Max,

      I am so so sorry to hear this. I can make offers of two resources. I used to work for Pfizer and know people who are brilliant clinical trial coordinators for oncology therapies. They can steer you in the right direction if you all decide to give that road a try. For starters, you might want to look at clinical trials.gov.
      Secondly, I have a friend who had the rarest of lymphomas, the natural killer cell lymphoma. It occurs ONLY in Asian populations and only 100 cases have ever been reported. He received a stem cell transplant and is only the second survivor in history. His name is Jong di Castro, from the Filippines and I believe your son would be completely inspired by Jong, and would be filled with happy optimism, humor and hope. Please let me know what I can do for you.

      I believe you will come through this well and loving each other more strongly than you do even now.

      Alice Schmid

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    2. Thanks, Netta.

      Thanks, Alice. Our oncologist hooked us up with a clinical trial for his type of leukemia. It's been going since '08 and shows good results. It will go public in '13 so most of the problems are already worked out. We have a great team of doctors, and the nurses are just awesome!

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  8. My thoughts are with you and your family. The road ahead may be filled with challenged and maybe a few potholes, but at the end of it, you will all be stronger and closer than ever.

    Here's to fighting the good fight and a speedy recovery to your son.

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  9. Hey Max
    Rachel T. sent me. I know it's devastating and our hearts - mine and my wife Jacqui's - go out to you guys. Tell Jason that Jacqui sends him a special buddy hug as she had AML 3 years ago and it looked lousy at the time especially as no perfect match was found anywhere in the world for a bone marrow transplant. We also had to find a clinical trial for a special low-intensity prep and a "double cord stem cell transplant." Cord matches are easier to find and we found 2 which adults need. We found an amazing doc who is world renown at City of Hope just outside Los Angeles where we live. It was a magical healing place and I hope where you are is as well.

    As you know by now, ALL is different from AML...and they recently found medicine (Gleevec) to treat CML and it's very successful...so they're getting there. They are all different kinds of blood cancers...there are 4 major ones as you know by now.

    Two things: as emotional and intense as things are over there, keep your cool...keep your ears open to what your oncologists tell you...get second opinions...become an expert...I did massive research and a zillion phone calls to top cancer people across the country to figure out exactly Jacqui's best shot. I like that Jason has already been admitted to a clinical trial as your oncologist has already figured out Jason is gonna need cutting-edge new treatment - that tells me he's on top of the situation but I am reaching out to you to stay very involved, totally engaged in the medical world Jason has entered, and really and truly be Jason's advocate and turn into Sherlock Holmes and quickly get educated on the disease and best way to deal. There are many more decisions comin' and the more you know and ask and explore the better your choices will be. Jason needs you at your rational best...and the more you know about ALL, the better. As they may have told you, every case is different and needs its own customized approach and treatment.

    Second, Jason's will and mental state is very important as it was for Jacqui...it was crucial. If he says he plans to go back to school, then I'm goin' with that. Jacqui postponed her treatment to go to the store where she worked to make sure the Christmas windows were done...she KNEW she was gonna make it and come back to her world. You can let Jason know I'm a philosophy grad from Rutgers and lived in NC (Winston-Salem) for a year making a TV series there...so we all got a couple of 6 degrees with him.

    It would be easier to converse further details by email so please feel free to contact me at filmmaking@actioncut.com and eventually by phone if you wish. Jacqui's journey inspired me to write my memoir about filmmaking, and love, and cancer healing, all rolled into one wild and crazy book. For now, here is an excerpts page...if Jason likes James Cameron's work he can see early monster designs he did for me many moons ago. Also, Jason would laugh at reading how I almost decapitated a young Drew Barrymore. More important for now, the 5th and last excerpt is about Radiation...THAT he needs to read as it will crack him up especially if his treatment will include some rays.
    http://www.kissmequickbeforeishoot.com/media/book-excerpts/

    All for now. Hang tough. We're standin' with you. May every single day be a healing day for Jason and may the Force be with him.
    Guy & Jacqui

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    1. Thanks, Guy. Yes we have a great team. Our "adult" oncologist had Joshua in a "pediatric" clinical trial within hours of diagnosis. He is 21, so technically an adult, but they are finding people in their early 20's benefit from pediatric treatment techniques coupled with an adult treatment setting. Now we have a team of adult and pediatric oncologists, and the cancer center here is the best in the region, so we have a lot of medical support.

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    2. Great to hear you've got a great team around Joshua. And again, we wish every single day to be a healing day for him.
      All our best to you, the family, and especially to Joshua.
      Guy & Jacqui

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  10. My heart goes out to you and your family, Max. Word fail me as I read this. I admire the courage in your son, and feel saddened the world will lose an incredible young man. I wish you all peace and comfort through this arduous journey. Hugs from Cyprus. x

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  11. Thinking of you all. I am so sorry your son is so ill, it's a dreadful thing for a parent to watch a child suffer like that. You sound like a very positive family, I have great respect for that and will be thinking of you all.

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  12. Oh my god, Max, I am so terribly saddened after reading this. My heart goes out to you and your family. I will be thinking positive, healing thoughts for each of you every day. If there is ANYTHING I can do to help, please let me know. Sending much love to you and yours,

    Lisa

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    1. Thanks, Lisa. Keep those healing thoughts coming. ;)

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  13. Oh sweetheart.... big hugs to you and your family. I'll keep you in my thoughts and send as many positive vibes your way as I can muster. xoxo

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  14. Damn, Max. Just . . . damn.

    Thoughts and prayers, brother.

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    1. My feelings exactly. Damn. Just...damn. I'm still a little numb.

      thanks, brother.

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  15. Max-

    We're all here. Prayers and all.

    RB

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  16. Thanks, RB. I have some awesome friends online ;)

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  17. Very sorry to hear about this, Max. Many good thoughts and prayers going Joshua's way. Eden informed me via email and I'm happy to donate and help.

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  18. I want you to know I'm pulling for Josuha! I have seen the power of prayer mixed with good treatment and it is a powerful combination. I will spread the word to my Christian friends and you can believe that Josuha will be in my daily prayers. You and the rest of your family will be there too.

    Give Josh a big hug from all the people who love you and him!

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  19. Max, I'm praying for you, your family, and most of all - your son.

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  20. Max, I am a writer with no words to say that can express my sadness at your news.

    I know from experience just how much can be achieved by the will to FIGHT like hell. You say Josh is strong...I'm glad to hear it. Your entire family and by extension the global family you have online will help him stay that way. I have no belief system as you know, but I do believe in the power of unconditional love.
    If that counts for anything, Joshua will beat this thing.
    Warm wishes always.
    Soooz

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  21. Thank you, Soooz.

    Joshua is definitely a fighter and we intend to fight like hell.

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  22. Just wanted you to know I was thinking about you and your son. My brother was diagnosed with Lymphoma a few years ago. It was a tough battle, and he fought hard with humor and tremendous positive attitudes. He's been cancer-free for three years now. You and your family are in my prayers.

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  23. Maxwell, you and your son are in my thoughts. Every single coin I have in the good Karma bank is yours and then some. What a brave fighter and tough young man, Joshua is. I'm amazed by his attitude (and his love for college :) ). Please take care of yourself as well during this time. Joshua will need you to be strong along with him.

    Big hug to both of you.
    Ann Charles

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  24. Max, my heart's breaking to hear of what you and your family are going through, and you'll all be in my heart and hopes. It sounds like you have a great team of doctors, and I hope the clinical trial your in will hold the promise of a cure for your son. I'm happy to donate and I'll be sure to pass the word on. Sending you and your son all the love and hope I can muster.

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  25. I would like to thank everyone for all the love, kind words, thoughts, and prayers that are being given for our son. Every single one means the world to us. Thank you!

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  26. For once I am out of words. Max, my prayers go out to you and your family. You all are so amazing. There isn't much else I can say. Just know that you have support and keep believing in the power of prayer.

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    1. Thanks, Jackie. Prayer is the greatest power we have.

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  27. As my wife said - You guys are awesome and every post brings me to tears and fills me with joy at the same time. xoxoxox

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  28. Maxwell, We don't know each other, but I heard what happened. My prayers and good luck to your family. I've had many family members who've passed away due to the horrible disease. Know that many stand with you in this fight.

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  29. Max, words fail me... I will do whatever I can to help, and will keep Joshua, you, and your entire family in my prayers. Strength.

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  30. Sending sincerest prayers your way.

    John

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  31. Max, my heart goes out to you, Joshua and your whole family. It must be heartbreaking to receive this news, but I hope Joshua and you will remain optimistic - Leukemia sounds awful but with modern medicine it's no longer incurable or unbeatable. I'd like to share a little bit of what I know, and hopefully give you some courage to face and to fight the battle.

    Many years ago, I lost my first ever boyfriend to Leukemia, who was serving in Tibet. That was more than 30 years ago and we knew very little about this type of blood cancer. About ten years ago, one of my best friends who has been living in the West Coast of America was diagnosed as having Leukemia. She went through the usual chemo treatment, which was very tough, strenuous and demanding both mentally and physically, as Joshua will find out. However, my friend is one of the most optimistic and positive person I know, and she beat it. Now She's been free of the disease for a number of years, and enjoying her life.

    I am sure that with tremendous support from family and friends, Joshua will beat it too! BY the sound of your post, he is a strong, determined, wonderful young man full of hope and prospect for the future.

    You have my most sincere prayers - May you all remain positive and strong, and best of luck with the treatment!

    Junying

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  32. Thank you for the encouragement, Junying.

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  33. Max & Tricia,

    My heart breaks to think of the battle your family has ahead of you. I see from reading all the posts that Joshua has a cyber raid forming around him sending extra strength, energy and love. Sign me up. I, too, will be thinking of you all and sending positive thoughts daily.

    Hugs,

    Bobbie Decker

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  34. Bobbie, thank you so much. Words can not express how much I appreciate you and our wonderful cyber family.

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  35. I know both sides of the coin in what you are facing. I lost a grown son, and I'm a three times breast cancer survivor. So I know the loss, the fear, the pain and finally the peaceful acceptance.

    My cancer doesn't approach Joshua's in severity, but I know that with his courage, the love and support of all your family's friends and they, themselves. And strength through God, he's gonna make it. Please add my best wishes to the mix.

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  36. I wish you are your family the very best. I have been where you are with my daughter and know the strength it takes to keep it together during this trying time.

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  37. Your son sounds incredible...so strong and determined at such a young age...I wish you all the very best and look forward to hearing his views on philosophy when he graduates and finds his voice again.

    Michelle
    @_EroticCandy_

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  38. Max,
    It is with a deep sense of commitment that i am writing this piece to you as a parent and as an adult hematologist-oncologist from Clifton, NJ. I am taking this project on personally to ensure that we reach and possibly surpass the goals set to give Joshua 'a break' and a second chance in life. With Joshua's incredible courage and your fatherly support, coming together to 'tackle cancer one click at a time' is a matter of course! I am donating on behalf of CancerQ Inc. (www.CancerQ.org), a newly launched (March 20th, 2012) online community meant to serve as a platform where patients of all types of cancer can meet with each other, oncologists and other cancer healthcare givers, exchange stories, pictures, videos, treatment regimens and the various side effects thus lending helping hands to everyone in the community. Stay well and stay strong!!!

    Richards Afonja MD
    Founder and CEO, CancerQ Inc.
    www.CancerQ.org
    '........tackling cancer one click at a time'

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  39. Thank you Dr. Afonja. Your generosity is very much appreciated. WWW.CancerQ.org sounds like a very helpful resource. I'll be sure to check it out and spread the word to my network.

    max

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  40. Dear Max,

    It is almost 10 years ago now that my then 11-year old daughter was diagnosed with T-cell ALL. I reached out in every direction for support, just as you are doing now - and received. I am donating to honor those who helped me when I was in need and give my best hopes for Joshua's complete recovery. I'm happy to report that my daughter, after a 3-year struggle has stayed cancer-free is now 21 and finishing her third semester at college. May Joshua follow the same path. All my love to you and your family.

    Elle Kamihira

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  41. Thank you, Elle. It's a great encouragement to hear about your daughter.

    xoxox

    max

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  42. Hi Max,

    Reading about your son made me realize that life is short and fragile. I know my dad would do the same for me as you are doing for Joshua. That's why I donated. I'm currently enjoying the wonderful age of 30 and I want your boy to reach that age as well!

    Stay strong.

    P.S. I don't know if Joshua is into metal ('cause of the Metallica tattoo on the baby's arm in the picture), but the sign \m/ stands for brotherhood and support among us metalheads. I'm offering mine :)

    \m/

    Bas

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