Today was Max's first day of 2nd grade. I arrived at the Mikulak's house this morning, to find Max playing a game on the computer. It was so nice to see him in a good mood, with an occasional smile when something good happened in the game. Big sister, Hannah, was standing behind Max, cheering him on. However, one thing that Max doesn't like right now is people talking to him and that basically means everyone, including Hannah. So Dad asked Hannah not to say anything because they wanted Max to stay in a good mood for school. Again, the medicine that Max is taking makes him very moody...not by choice.





Then Mom told Max it was time for his medicine, and she put a syringe full of a blue liquid next to him. Max wasn't bothered by this...a simple okay. Max waited till break time was good with the game and quickly lifted his shirt and injected the medicine into his g-tube. The one thing that did bother Max was Hannah watching. Apparently Hannah is not allowed to watch these types of things and Max gets very upset when she does. So Hannah left and came back when Max was done.





Then it was time to get Max's hearing aids on, put the computer away (with the promise that it would be paused and not shut down) and finish getting ready for school.



We arrived at the school a bit early, to avoid the traffic and crowds.



All the kids wait in line, on their assigned classroom number. Max has the same wonderful teacher he did last year. Same classroom. Same number 23. Max was the first in line. He always has his throw up bin and either something star wars or some aircraft. Today was an aircraft.




Occasionally people would stop and say Hi to Max. Most of the time, Max looked away or looked down. Max doesn't look at people very often. The second shot is Max with his teacher, Mrs. Strurt. She is so amazing with Max.



Then the other kids began to arrive. A number of the boys from last year are in Max's class again this year. A few of them stopped by to say Hi.



You could tell Max wasn't comfortable and probably had a bit of sensory overload. Max's parents sensed it and decided that it would be best to go in the classroom to drop off Max's supplies and then head to Children's Hospital transfusion clinic, for his last day of IV chemo and platelet transfusion.


Before leaving, Max needed to take some pills. They're supposed to dissolve under his tongue and Andy told me that they don't taste good.



Max was headed out the door...his first day of school done, before the bell even rang. As everyone was headed in, Max was headed out. Today is Max's last day of IV chemo (for this current round / combination) and tomorrow, he should be starting oral chemo.




For those of you that don't make it to Max's lab results (on his blog), last week, Max had a CT scan because of severe abdominal pain. Mom and Dad thought it might be appendicitis, but when the CT came back, it showed an enlarged liver with many spots of new disease in the liver, as well as new disease in his abdomen. When I spoke with Melissa last night, to figure out the details about shooting Max this morning, she wasn't sure if Max would make it to school at all because he's been having so much abdominal pain. Even though Max's first day of school was only about 15 minutes long, I was so happy that he was able to make it at all. If you're the praying kind, please say some prayers for Max and his family! And please share your thoughts and support with them.
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.
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.