Let me start by saying today was tough for me. Well, today was tough for Max too. I cried during recess. I cried my entire way home. I cried while I was editing. It's just not $^*&(%# fair!

I called Melissa this morning to see what was going on today. No matter what, I knew I had to shoot Max today because the rest of my week is so swamped. Melissa said that Max was in school all day so...shooting at school it was.

I arrived shortly before lunch and when I walked in the door, Max was flushing his g-tube. I'm assuming he does this daily at school, a certain amount of time before lunch. I also saw Max's wheelchair. I knew he was in his wheelchair today because Melis had told me but still...I was saddened when I saw it there. I also noted that Max was holding his leg. And then Lisa, Max's teacher, told me that he was having quite a bit of pain today.



While all the other kids go to the school lunchroom, Max goes to the nurse's office for lunch. Why? Because Max gets his nutrition via his g-tube. I think usually Max and a chosen buddy walk to the nurse's office together but due to Max being in the wheelchair, the nurse comes and picks him up. A buddy still tags along and it's so cute to see how many kids raise their hand, hoping they're the one that Max picks.

It was hard for me to watch Max get out of the wheelchair because his left leg was hurting him so much. But he didn't want help...from anyone. Once on the bed, Max said, "my leg really hurts". One thing that was so nice to see is that everyone at the school has Max's care so well taken care of. They all know exactly what to do. After Max mentioning that his leg was really hurting, the nurse immediately got on the phone and called Mom, asking if she could give Max more pain medication.


And yes, she was able to. And she did. She clamped the tube feeding, injected the pain medicine into the g-tube and then reconnected Max's nutrition. He also complained of nausea and got some anti-nausea medicine.


Max LOVES to draw. I think he has drawn every time I've seen him. And I so loved seeing an envelope of his drawings pasted up above the head of the bed in the nurse's office.


I also wanted to share this shot of Max's braces, which help strengthen his ankles.


After a bit, Max said, I need to lay down. I'm not really sure what prompted this...his pain medication? the nausea? the pain? I really don't know.


But it didn't take long and Max was telling stories and smiling. We talked a lot today about bugs. He seems to like them. This shot was when he was talking to his classmate. I just loved seeing the sparkle in his eye as he talked to her.

I also noticed how much more color Max had today versus the day I had photographed him getting platelets and blood.


And Max's g-tube. He was so proud to tell me about how this button doesn't leak and isn't messy. He said that his old one was but this was a new one. And Max turns off his nutrition himself. If he feels like he's getting too full or is nauseous, even after getting anti-nausea medication, he will clamp the tube to turn off the feeding. Here, he was helping the nurse disconnect everything.



After lunch, if Max is feeling well enough, he goes and plays with the other kids at recess. The nurse wheels Max out of the office and then Max's teacher (who is with him in the office much of the time during his feeding), wheels him out to the playground. I wanted to share this photo of the nurse wheeling Max out because you can really the bald area on Max's head, where the radiation was done.


Once we got out on the playground, Lisa asked someone to get the shuffleboard out for Max to play with. It was so great to see all the kids come and play with Max. Most of the time, he was surrounded by girls. ;-)

It was all bittersweet for me. It was so wonderful to see Max having such a great time with his friends, in spite of the wheelchair. But I was also so saddened by the day...watching Max in pain, hearing him express that he's hurting, and seeing him in the wheelchair. It was just really hard to see and hear!




I try so hard not to cry in front of Max but I couldn't help it today. I turned away and did the best I could to recompose. Today, I knew my time was done with Max, without him even telling me. I did recompose (if only for a moment) and asked Max for my one last shot. He sat there so proud...and smiled. And it didn't take long for my tears to start falling again.


What an amazing little boy!

ETA: I always email the Mikulak's the day's photos and today, I had mentioned that I cried and cried and cried about Max. Melis shared that while the pictures are true to life, it's important to keep in mind that the pain that Max is experiencing right now is presumably due to one of his chemo-meds and not caused by the disease. While this information doesn't make the pain any less real, it does make it a bit easier to swallow.

Sharing some words from Melissa--
Wipe those tears away and be happy with today. Live life to the Max.
There is little time for tears when there is so much to be thankful for.

7 comments:

  1. What a beautiful journal of a beautiful boy. I just wanted to leave a comment because I have not done so yet and thank you for using your incredible gift of photography to share a bit of Max's life. It's definitely impacted and changed me. What an amazing boy Max is....so very inspiring.

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  2. I read the entry "his wheelchair" and the tears streamed down my face, I can only admire the parents of these brave wariors, my mind does not begin to comprehend what they must go through on a daily basis.
    Heidi
    South Africa

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  3. Deb -

    This is an enormously powerful set of images and words that I have found to have an immense impact upon me. I'm so very glad that you agreed to do this because there is such an incredible perspective here that is impossible for the parents to capture. Sharing these moments, these details, and this wonderful young man in this manner makes his life, his families experience, and this disease come to life in an unexpectedly personal and powerful way.

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  4. wow Deb - the photos are truly stunning and so real - i feel like i am at the school with Max and his mates - what an amazing warrior , what an inspiration - nothing will get Max down - we could all take a lesson from him and his family- thank you for sharing this journey with us.
    God Bless
    Samm mom to Deqlan dx 25.05.07 ned 16/01/08
    www.deqlanhiggins.blogspot.com

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  5. I wanted to tell you the pictures are just beautiful. Carolyn Wing grandma to Laura Stage IV neuroblastoma carepages.com pagename LauraVDB
    carolyn_wing@yahoo.com

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  6. Your pictures make me feel like I "know" Max. He is truly an inspiration - and although I can only imagine what his family must go through on a daily basis, I can tell you this has made me cherish my child even more and makes me not sweat the small stuff like I once did. You've done that for me and for that I thank you! I hope that I can give back to this cause. When is the cloud angel print going to be available?

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  7. Thank you for sharing your photos and your own perspective of Max's day to day life. You are doing a beautiful job and we thank you. Max is a DEAR friend and beautiful child to our family.

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