not so musical

I met Max and family in Del Mar for music on the greens tonight. The place was packed with people, listening to a band playing. Andy brought Max and one of his friends, Jack, and Melis brought Nick and Hannah and one of her friends.

I brought Max a couple bags of Pokemon cards that my oldest no longer wanted. He seemed happy to get them but not very talkative. Max stayed in his jogging stroller, while Jack sat on the blanket...both boys looking at the cards, but neither saying a word.

The entire time I was there, I didn't see Max and Jack say a word to one another. I tried talking to Max (just a bit) and he said, please stop talking to me. Of course, I stopped.

Then Andy brought out a syringe and told Max that it was time. Max lifted his shirt and started injecting the syringe of medicine into his g-tube. This medicine is part of Max's current treatment roadmap. As Andy recently posted, this is likely their last shot at stopping Max's neuroblastoma. Those words kept running through my head as I photographed Max injecting the medicine into his body...hoping that this combination of drugs / chemo will be the magic bullet to wound this currently incurable cancer and buy them time, time to live and hopefully some day find a cure.

Pretty much the entire time there, Max was upset and just wanted to be left alone. With Mom's approval, Hannah ended up asking Jack, Max's friend, if he wanted to play with her and off they went. Max just stayed covered with his blanket, with his head down.

It was only about 20 or 30 minutes after arriving that they decided it would be best to take Max back home. Andy left with Max, while Melis stayed with the other kids. One thing that was so very evident tonight is just how hard Max's fight against neuroblastoma is on Max...and his family.


  1. I feel so sad that Max feels so bad right now. These pictures just break my heart - for all of you.

  2. So very sad. This little boy should be running and playing instead of hurting and being ill all the time. Where is the fairness in this? My heart aches for him. There WILL be a better day for him. Our prayers Will be answered and he will, one day soon, be running and playing like every normal boy. Hang in there, Max.

    I love you, Nana

  3. Deb, you are sensitive in both pics and words. I can't add anything more than what Nana already said. lisa

  4. These photos really catured last night. They are very sad... and very true. -- Max's Mom

  5. Tears and prayers for Max today. Prayers that his joy for life would not be stolen away. May enough grace cover his whole family in order to get through such a challenging time.

  6. Breaking my heart. I wish I had the words to make Max smile and encourage him to be strong and keep fighting. We'll try this weekend!
    Always thinking of you Mikulak family.

  7. Oh Max - I so miss that spark in your eye that we used to see in the pictures from when Deb first started this journey. :(

    I have to say that I love that picture of Nicky with mom's hand on his head. so sweet. Melis, you are an amazing woman and mom. Your whole family amazes me.

  8. be strong captain Max
    your plane is on runway nine
    all systems ready
    fly smooth, your passengers had
    mashed potatoes for breakfast

    a (HH:-) tanka inspired by you and your family [tanka=5-7-5-7-7)

    I think someone needs to schedule a ride in a bi-plane for Max!! I'll gladly donate to help!

    Steve Aldrich
    Charlotte, NC

  9. great idea, steve! they have bi-plane rides out of the carlsbad airport just 20 min up the pike. they can fly right over max's house and school. i've done it before and it was amazing. i'll ante up, too! melis & andy, let me know! lisa

  10. These photos break my heart...I too will help with a plane ride...great idea!! Let me know. Praying for you face the future. Sending hugs...xo Linny
    The photos are a special gift of capturing Max...

  11. Makes my heart sunk. The reality of pediatric cancer. The physical and emotional burdens are so heavy for a child to bear and what a toll it brings to the child's family. Melis, I am going to ask my friend to send the Lucas Film goodies to Max. I hope it's ok. Hopefully they will give Max a refuge, however small and however brief. Shiho

  12. wow deb. I always struggle to find words when I look at mashed potatoes, so i rarely post a comment. this entry is just so sad, so unfair, so so not fair.

    sending many many well wishes to max.... amazing little max.

  13. Hope is what keeps us all going, so how can we ever let go of it? I love the photo of Max on his page holding the stone that says "hope"...I think that says it all.

    I hope for better days for dear Max and for all of his family. It is heart wrenching to see this poor child suffer. God bless, hold, and heal dear Max.

  14. God bless you and your strength every day Mikulak family xo

    Love, Sera, Bella, & Kaia


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