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.

15 comments:

  1. Thanks Deb...I am so happy to see Max got to go to school today, even if just for a short time. And 23, well that made me cry. Something as simple as a number. It's our lucky number...
    I was struck by your photos with Max and Hannah. It really is something to see Big Sis hovering over little brother, even if he disapproves right now. Some roles just don't change even when circumstances do. I was also struck by his typical brotherly reaction and wanting privacy with this sis and the G tube...are you that invisible to him? That is something that really amazes me...

    ReplyDelete
  2. thanks for documenting the first day of 2nd grade for Max! we are the praying kind, and have Max in our prayers everyday. thanks Deb.
    Andy and Melis - you are strong and amazing.

    ReplyDelete
  3. Praying here in northern Ca for Max. Happy to see him make it to the first day of second grade even for a little while. Thanks Deb and Mikulak family for sharing your special boy.

    ReplyDelete
  4. We will keep on praying and NEVER GIVING UP!
    xo,
    Bree

    ReplyDelete
  5. Deb,
    Thank you once again for these glimpses into a real life story--one of courage, strength, fight, and most of all love all stuffed into the everyday of a real life family.

    We are planning a special prayer time soon for Max and family via email and will make sure you get the time and date to share with those following Max through your blog.

    God Bless!

    ReplyDelete
  6. Thinking about you Max. My lil Bella and I... we are so proud of you and your first day of school. We think of you every night in our prayers and so proud of Mom and Dad and big sis for watching over you and supporting your first day of school. Love, Sera, Bella, & Kaia

    ReplyDelete
  7. My 2nd grader and I were so happy to see Max at school on the first day. It has been inspiring to watch your family live life to the fullest, embracing everyday with strength and courage. I continue to pray for Max hoping that the love he gives to you will continue to carry you through each and everyday.

    ReplyDelete
  8. Thanks for giving your talent to capture the incredible Max and his brave journey. His parents are quite special as well, and we continue to pray and hold them in our collective hearts and hands.

    ReplyDelete
  9. An inspiration... making it to school with so much pain.

    I can't help constantly thinking of every little thing that can be done to help (what strong human nature it is). I notice that everyone seems to be an arms length away; perhaps this is due to weakened immune system...or that you can't constantly be hugged or hugging ;-) But, it seems like Max needs to be getting a lot more hugs (of course solely based on today's photos because I'm sure he gets quite a few)! And I know this photo journey is about Max... but I bet the parents and siblings need more hugs too!

    Go hug someone today!

    ReplyDelete
  10. Hi Max,

    I think about you a lot. You are an inspiration to me and I want you to know that I pray for you and your family al the time. As I always tell the tennis players I work with, a champion is someone who always tries their hardest. You are a champion - keep it up!

    Andy V

    ReplyDelete
  11. I am Jarod and Bree Ross' neighbor. Just wanted to let you know, Max has been in our prayers. So glad Max got to attend his first day of school. God Bless all of you!
    Mary Jean, Randy & Leah

    ReplyDelete
  12. Andy and Melissa, I just wanted to say I am in awe of your strength and openness in this enormously challenging and heartbreaking time. Please know I'm thinking of you in India, where I moved with my family two months ago. My thoughts are prayers are with you and your family as Max struggles through this enormously difficult time. He's such a trooper. With hope and love, Geeta

    ReplyDelete
  13. Hi Andy/Melissa...
    We check in all the time --- Max amazes us and we just wanted to let you know we're thinking of you.

    Neil & Margot

    ReplyDelete
  14. We just found out that he's gone... we are so devastated for his family and all of his friends. Thank you for photographing this lovely boy and his family and sharing those moments with us. We are shocked that he's gone...

    ReplyDelete
  15. thanks for documenting the first day of 2nd grade for Max! we are the praying kind, and have Max in our prayers everyday. thanks Deb

    Carmel Valley Real Estate
    Carmel Valley Homes For Sal

    ReplyDelete