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From "Time for another session"

"When the session was done, I looked in the sky and saw this angel in the clouds. It was at that moment, that I knew our journey together was so meant to be."

Max's Cancer Blog

Max's Cancer Blog tells the entire story - from diagnosis to death to after.

A nice person left a comment on the last entry 8 months ago, asking us to post more pictures taken by Deb. Almost all of the photos that Deb took of Max are on Shutterfly, so click here or click on Max's picture below to see all of them. We miss Max so much as his birthday approaches June 30, 2009. But the photos on this and our other blogs, and the comments we still receive all the time, reinforce to us how lucky we were to have the seven years we had with Max and how we need to be thankful for those years.
Max Mikulak photo in Pacific Beach August 2008
Today, the Carmel Valley News / Del Mar Village Voice released an article about Max, the celebration of his life, the 5-mile walk and the Magic Water Project.

You can read the article here

first, i can't even begin to describe how amazingly beautiful and touching the celebration of max's life was. i'm going to try and share as many details as i can.

the celebration took place on a grassy patch in del mar, that overlooks the beach. it's a place where the mikulaks spent a lot of time and holds many fun memories as a family. there were chairs set up in a center area, with many tables around the perimeter. in the front was a podium and two enlarged photos of max.

this table held photos of max, throughout his seven years, and pages for guests to create for max's scrapbook (in place of a guestbook).


this was the main table, with two beautiful orange bouquets of flowers, the angel in the sky photo, and bagels and water for guests.





and the mikulak family didn't miss any details. every vase at the celebration was filled with legos (in the place of stones, jewels, etc.).


the mikulaks had numerous lego tables set up for the kids. the kids quietly played with the legos throughout the ceremony, just the way max would have wanted it. after the ceremony, the children were able take home any lego creations that they made. even the big kids had fun with the legos.


a table, with all of max's favorite things. it was so beautiful how they had the blanket, with the words love isn't love until you give it away. max gave us all so much love. and his spirit and goodness continues to live on in all of those he touched.


andy, with three other incredible people (and the other three founders of the magic water project foundation).
- dr. giselle scholler. max's doctor (from vermont). she is a pediatric oncologist that has lead research work for the new and promising drug, nifurtimox. max was a participant in this FDA trial, which dr. scholler leads.
- pat lacey. pat, has a four year old, battling relapsed neuroblastoma (diagnosed at age 7 months). he keeps a wonderful blog on will's progress. and pat is such a fabulous writer.
- margot hutchison. i actually met max and his family through the hutchisons. kiele and their son, sam, went to the same elementary school. their son, sam, is also battling relapsed neuroblastoma.


kevin, melissa's brother, who they referred to as the ring master, started off the celebration and was such a great speaker.


i love this photo! andy and melissa smiling, while listening to melissa's brother share a story about max. hannah holding papa's hand. and one of hannah's closest friends, hersheeta, with her arm around hannah. earlier, i saw hannah playing with hersheeta's ponytail. it was so sweet.


bree, max's cousin's wife, read the book, where the wild things are.


randee, melissa's sister, also spoke fabulous words about max's life. randee has also been instrumental in making the sale of the angel in the sky print happen.


ms. weitz, max's kindergarten teacher, spoke and shared some wonderful stories of max. during her time, a train went by. this is part of why max loved this location so much. you could play at the park and see the trains all from the same location.


max's first and second grade teacher, mrs. sturt. i've had the pleasure of meeting mrs. sturt and seeing her in action, with max. she is such an incredible soul and her speech was beyond words, sharing her love for max and some incredible stories of her time with him.


then hannah's brownie troop sang this most beautiful version of you are my sunshine.

you are my sunshine,
my special sunshine.
you make me happy,
when skies are grey.
how much i love you.
please don't take my sunshine away.

the other night, max,
as i lay sleeping,
i dreamed i saw your smiling face.
when i awoke, max,
i knew i'd miss it,
but now you're in a better place.

you are our sunshine,
our special sunshine.
you make us happy,
when skies are grey.
you'll never know, max,
how much we'll miss you.
please don't take our sunshine away.




hannah, with the support of another one of her closest friend's, jenna, read a book, max. her parents were so proud of her.




den leader, steve, and his wolf den 734, were up to speak next and they had a special thing prepared, which andy was unaware of. at the last meeting, with the hopes that max would be able to attend, steve had planned that the cub scouts would make model airplanes. unfortunately, max was not able to make this meeting because he was too sick. steve spoke some wonderful stories about max and then, the boys did a missing man formation with their planes.






melissa's brother-in-law, mike, also spoke some beautiful words and prayers.


we weren't sure it was going to happen because of the clouds, but they cleared enough that they were able to fly....two vintage WWII aircraft. it was so awesome and special. kevin, the ring master, had said that he knew max was going to right there with the planes and that if we saw him, to give him a wave.



and then they had a raptor hawk, from the wild animal park. the plan was that the raptor flew down the middle of the chairs; however, i guess there wasn't enough room and the raptor diverted to a nearby tree. it was such an incredible site.



throughout the ceremony, it was so great to see andy and melissa smiling, listening to the many wonderful stories shared by friends and family, about max.


after the celebration, i went to max's school, to capture the orange ribbons that the school had tied to every tree and every fence post surrounding the school. such a thoughtful gesture on behalf of max's school. this is another photo of one of the trees at the school (also a photo in the previous post).

this morning was the celebration of max's life. it was so incredibly beautiful...
on a grassy patch overlooking del mar beach.
tons of people (adults and children).
wonderful speakers.
so many beautiful stories about max.
tables filled with legos for the kids.
two children's books read.
memory tables.
a fly by with two vintage WWIIi aircraft.
a raptor, that flew in.
truly an amazing celebration of a little boy's life, who has touched so many.

i took tons of photos for the mikulak family. this one was the last...a photo of a tree at max's school. every tree surrounding the school has an orange ribbon tied around it.

i hope to post many more photos over the next few days of the beautiful celebration and i will also be photographing tomorrow's 5-mile walk, for the magic water project. i know this blog has had many followers and i hope that sharing the celebration of max's life and it's beauty will help offer a closure of some sort for all.

thank you for all the wonderful support and encouragement throughout.
The previous post was from Andy, Max's Dad. I was on vacation for the past five days (flew back tonight)...I found out this morning via my iphone internet that Max had passed away (I checked Max's blog daily).

The night before I had left on vacation, Wednesday, August 27th, I shot Max. It was a last minute thing that Melis and I had decided to do...my kids and I would go over to the Mikulak's for a "play date", in an attempt to be with Max for an extended period of time and hopefully catch some of those precious, but fleeting, smiles of Max's.

When we arrived, around 4 PM, Max was sleeping and he remained sleeping for most of the time we were there. Melis had to wake Max up at 6 PM for some medicine. And between 6 and 7 PM, I was able to shoot Max doing two of his favorite things, with a smile...playing his computer game and selecting one of his new aircraft dogfight movies. After shooting Max choose one of his movies, he said, No pictures, while I'm watching TV. That's enough. And then we left.

I will miss him so much. He truly was an amazing child and such a gift to this world. A few photos from this past Wednesday, my last day shooting Max.

Max playing his computer game



Max deciding which of his new dogfight movies he was going to watch first.


And from the first time I met Max...the sweetest boy ever.


I will miss you buddy. I will miss you so!
Max passed away at 8:44pm PDT on Sunday, August 31, 2008. These two video snippets were taken Sunday morning. Who knew that Max would die later that day?

video
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.