king of the castle

Tuesday, June 24th, 2008 by Deb Schwedhelm

At the beginning of every week, Melissa emails me Max’s schedule so I know what is going on when. This week, she also shared that Max has been very moody, sullen, angry, sleepy and dizzy lately. We’re adjusting his pain medications, which are most likely the culprits. Hopefully by the end of the week we’ll have our Max back. When I got to the hospital, I was so happy to see that Max was in pretty good spirits…and he looked good too.

Today, I photographed Max at Rady’s Children’s Hospital getting transfusions. Max is transfusion dependent right now, receiving platelets every 3-5 days and red blood cells every 1-2 weeks. Spending around 4-6 hours per transfusion, this space…and these people are a huge part of their lives.

One of the things that I have discovered in photographing Max is his love for legos. Almost every time I’ve seen him, he’s had some type of legos to play with. Today it was a king and his castle.


Shortly after starting to play with the legos, Max’s button (as he refers to his g-tube) started leaking. He did his best to take care of the leaking himself…telling his Mom that he didn’t need gauze…but Max quickly decided that the gauze sounded like a better idea than kleenex that was falling apart as he wrapped it around his button. So Mom got some gauze and showed Max how best to put it on, since it’s different gauze than what they use at home.

Then it was time for red blood cells.


Max decided that he had enough of legos and wanted to move on to his other love (which might actually be a greater love than legos), computer games. Melissa set him up and he was on his way. I didn’t see him smile a lot while I was there, except when he was winning the game. He’s very animated while playing. Winning made him happy. Losing made him…not so happy.


I love that when Max concentrates, his tongue moves all over the place. I saw it in school and now here, playing his computer game. I couldn’t help but grab a shot of it. Also, I noticed the scabs on Max’s face and asked Melissa about them. She said that they are because of his platelets being so low. He gets any little scratch or anything and then it bleeds and it’s just hard for Max not to pick them.

As usual, I asked Max for one parting shot…

and then my time was done.

For more in-depth updates about Max’s cancer, don’t forget to check Max’s regular blog here.

ETA: I just realized that today has become yesterday. These shots were actually from yesterday, Monday, June 23rd. 🙂

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3 Responses

  1. Randee says:

    I just love it when I open your blog (which I do every day at least once) and find new pics of Max. These are great and they open Max’s cancer journey to the world-it’s a pretty sucky life for a kid and it amazes me how he still stands up and does “it”, what ever “it” may be. Thank you–PS I am waiting to hear from my printer-say a little prayer!!

  2. Anonymous says:

    I agree with Randee… It’s a very special thing to open your blog and because of it we become a larger part of Max’s journey. We know what is happening in his life but to actually follow along in these pictures is truely a gift to us.

    Thank you! Nana

  3. mooki says:

    deb, this post and photos are the best yet. what you’re doing truly approaches hard-core, serious photojournalism, but with the beauty, insight and sensitivity that befits max and his wonderful family. thank you so much for this work.

    mooki
    toby pannone’s mom