as most probably know, max is going through two weeks of daily IV chemotherapy right now, so chemotherapy infusion is what i shot yesterday. when i arrived, the chemotherapy hadn't been delivered yet. max was laying in bed, watching TV.

i noticed right away that max was wearing his hearing aids. i hadn't seen them on him in quite a while. melis told me that she's getting max used to them again because he needs to wear them in school, which starts on the 28th.




then the chemo arrived, in a special bag labeled CAUTION: Chemotherapy Drug. the nurse mentioned why she didn't have to gown and mask (only gloves) with max's chemotherapy (i can't remember why). melis joked with the nurse about how she often gets asked whether or not she has enough gloves at home, for when she gives max his oral chemo. melis said it's a joke to think that she's not going to touch a pill with her hands, that she is willing to put in her child's body.



the nurse laid the tubing over max's shoulder and he spent a little time inspecting it. they had already accessed his portacath, so it was basically just connecting the two tubings together.



once the chemo was connected, the rate was set on the infusion pump and chemo began.



after the chemo was started, it was time for melis to do her thing...get max's food ready and his g-tube connected.


mom told max that his TV time was up and asked max if he wanted to finish building his star wars ship. and so together, they began working.





when i was driving to shoot max yesterday, i was thinking...more of the same photos of max in the infusion room. i hope the readers don't get bored with these. and then i thought, this isn't about me. this isn't for the reader. this is for and about max and what he's going through...the every day reality of a boy and his battle against neuroblastoma. and right now, the infusion room is a huge part of max's life. this is the reality of needing platelets and/or red blood cells almost every day and getting IV chemotherapy. this, the infusion room...is max's home away from home right now.

11 comments:

  1. You are so, so right. Keep doing what you are doing, and don't worry about "entertaining" your readers. You have a wonderful calling.

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  2. Thank you Deb for another look into the life of Max and his family!! Robyn is so right you have a gift and we thank you for continuing to share it with us.

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  3. Amazing boy.
    Amazing mommy.
    Amazing you.

    All my very best to Max and those who adore him-
    erin

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  4. Deb,

    What you give all of us a amazing! Thank you for giving us a glimpse into Max's life!

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  5. how could we be bored with beautiful pictures of a wonderful family who is dealing with the card they have been dealt. You are doing a wonderful job telling their journey. god bless you

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  6. Please don't ever think we are bored looking that the pictures of this amazing family. This is their life and I am forever touched by knowing their story.

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  7. I am falling in love with Max. He is simply amazing. Your pictures make me feel like I know him personally. They are packed with emotion and I look forward to them no matter where he is, or what he is doing.

    So many prayers and positive thoughts going out to him and his family.

    Michelle

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  8. I ended up here reading about Max's journey because I am am aspiring photographer and one night on a photog site one click led to another. Because of these emotion filled images this little guy and his family have crept into my heart. I continue to pray and think about Max often. The attitude and courage of this family is truly inspiring. Thank you Deb for using your talents in this way and thank you Max for allowing us to follow your story.

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  9. What you are doing for Max's family is amazing. I have been reading his blog and your blog for a long time now, something I came across randomly and couldn't stop reading. I don't know Max (I live across the country in NJ) and I dont know anyone with NB--I also don't know anyone with as much courage as Max. When I talk to God, I always ask him to look over for this little boy who I will never know personally but has touched my heart.

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  10. Max you and your family are in my prayers. vowh

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  11. Oh. Poor baby. Feels very sad to look him. Such a small child. how bad he must be feeling.

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