Every time I write a post for Max and family, I always wonder to myself...
Am I posting the right photos?
Am I writing the right thing?
Am I expressing myself accurately...the way I see things and really feel?


Well, I was going through Max's photos tonight and found that there's a few others from the last session that should be shared.

This was shortly after Max woke up. I just love that both Andy and Melis are in the shot with Max. Just a gentle moment captured.


And a shot of the playroom walls. One of the first things I saw was something that Max wrote, My dad is special because he takes me to Home Depot. I commented on how cute that was and Andy laughed a bit, shrugged his shoulders and said, Well, I don't know. And then Melis chimed in and shared that hers is even better. It said, My mom is special because she makes me cakes. She makes pies. She reads books to me. Then she shared that she's not much of a baker at all. I couldn't help but giggle.

But the one thing I want to share and get across is...there is so much love in the Mikulak house.
You can feel it.
You can see it.
Shoot, I bet if Melis did bake, you'd be able to taste it too. ;-)


And Max's medicine. I asked Andy about Max's medicine and he took me to the kitchen. I anticipated that I would see quite a bunch of medicine but seeing them all sitting there on the kitchen counter...well, I was a bit shocked. Remember...this is not a ill geriatric patient taking all these medicines; this is a little 6-year-old boy. You can also see the schedule there, to keep track of what is due when and what was given when. And there's more. In the kitchen pantry are shelves of additional medicine, nutritional supplements (for his g-tube feedings) and medical supplies.
I called Andy and Melissa this morning to see about shooting Max either today or Friday (my two available days this week). Melissa said that Max has been in a lot of pain and sleeping pretty much all day (not sure if due to the pain, medications or what). They had originally planned to go to the Aviation Museum this afternoon but decided not to, because of Max's fatigue and increased pain level. So the options were...shoot today, which was going to be spent at home, or shoot Friday, when a quick bolus of chemo is scheduled.

After talking a couple times this morning, we decided that I would just come to the house today and if Max was sleeping, well then...I would shoot him sleeping. That's what this is all about. We really never know. Whatever happens on the day that I'm shooting...happens.

I arrived about 3 PM and Max was still sleeping.


I saw Andy hook Max up (to his g-tube). No big deal was made. Andy just quietly did it. I'm sure it was a regular part of the everyday for him but for me, it wasn't. It struck me--this IV pole, which holds the daily nutrients that help keep Max alive, has become a standard piece of their living room furniture.



Little Nicky, who I think has come to really like me, joined in on the photo shoot. Max, sleeping there on the couch, in the distance, didn't budge.


About 20 minutes after I arrived, Andy told me that Max woke up and was in the play room. It took him a bit to wake up but soon, he and Nicky were playing (well really, Max was tickling Nicky). Andy was telling Max to be careful when tickling Nicky. Me...I kept thinking about Nicky being careful not to hurt Max. As an outsider, I find myself very cautious of Max's every move, always asking him if he's okay...if this or that hurts. Maybe this will change with time, as I get to know Max and his family more. But for the moment, it's hard not to be (over) protective of (and with) him.

I so adore the hint of Andy's face showing here, watching his boys goof around.


Then, carrying a large book, Max asked me to come with him. I gladly did. He started swapping out the kitchen chairs and said, sit next to me. I'm getting you this chair...a comfy one.

OH MY GOSH...are you kidding me. You're swapping out chairs so I can sit next to you, in a comfy chair. Ummmm...okay. I'll sit here all night if you want me to.

If you didn't know the type of kid Max is...now you do!

So we sit and look through every page of the WWII aircraft book. Max tells me which ones are American aircraft and which are German. I pay attention--look and listen--trying to soak up every bit of his goodness. (And the reason for the blog title...one of the pages in the WWII book was titled "max effort"...I couldn't resist.)


And then it was time for medicine. Three pills and a cup of juice set on the table by Mom. With a little grimace, Max takes them. Not exactly happy about it but part of the every day. Without a problem, he downs each pill...one by one.


After checking out WWII planes and taking his medicine, we decide to go do his favorite thing--play video games. I was excited to watch Max do something he loves so much. But what i didn't know and wasn't really prepared for, was that Max can't walk up the stairs on his own right now because of his pain in his legs. He asked his Mom for help. Melissa asked him if he wanted her to carry him. He didn't. He just needed a little help. My eyes welled with tears as i watched. This is the reality of what this disease is doing to Max's little body.



Playing his video game. Yes, I just love how max sticks his tongue out when he concentrates...just as he did at school.


This shot makes me melt...pure, beautiful and innocent.


And then...
and then...
in comes super hero Nicky. He is absolutely adorable. And he so loves his big brother.


Max wasn't very happy when Mom told him that he had to stop playing his video game. So in went a movie, the three sat on the couch together (well, kind of) and my time was done.

Okay, that's enough pictures for today, Max said.

Max always lets me know ;-)
May 20th. I had the honor of photographing Max at school. A few things to share right off the bat: Max is adored by all (teachers, staff and students). And his teacher, Lisa, is amazingly wonderful. It was so fun to see Max in an environment, where he is just being him--learning, playing and having fun.

Look at them. Need I say more ;-)


It's the cutest thing. When Max concentrates, he sticks his tongue out. I couldn't help but take some shots of this.


Before lunch, Max had to go to the nurse for some medicine and he got to choose a buddy to go with him. It was precious to see all the kids that wanted to go.


The chosen buddy for the day. While Max isn't the biggest fan of my camera, he was so proud to pose with his buddy for the camera. Max and his buddy played this little 'crashing into the wall' game the entire way to the nurses office. Not unlike something that any other 1st grader would do, but what was different is that Max fell down about four times while doing it. I'm assuming b/c it (the game, the walk, whatever it was) just became too much for his little legs at times.


And then on the playground, Max decided to start this game, where he was the "shoe monster" and he was going to eat everyone's shoes. It didn't take long for everyone to follow suit and soon enough, everyone on the play structure was participating in the shoe monster eating game.

I just adore this shot, where even though you can't see the boy's face at the bottom of the slide, you can see the smile on his face, to Max.


An important photo. You may not think so at first glance, but you might also not know that Max has painful tumors on his femurs, his lung, his spine and his skull. He walks with a limp. And he runs with a limp. He does so well at running and keeping up with the other kids but the reality is...it's probably very painful for him to do so. This photo captures that unique little run of his.


Max's okay, I'll give you one last shot shot. :-)


A shot I took in the classroom prior to leaving. Without a doubt, Max ALWAYS does his best. He's one amazing kid!
Max has had many recent days of radiation and I wanted to make sure that it was something that I captured. That meant shooting Max twice last week because Steve is out of town this week and there was no way that I could make a 7 AM radiation appointment without him being here. So I arrived at Rady Children's Hospital at 6:45 AM, Friday, May 16th to shoot Max during a radiation appointment.

I have to say, I'm always on the verge of crying when I'm photographing Max and often, I'm full up crying either on the way there or on the way home...sometimes both. I try so hard to put on my game face...my face of strength. Some days I do a better job at it than other.

This shot cracks me up b/c Max was just talking, talking...just another day for him and as pleasant and wonderful as can be. This is when the nurse anesthetist and anesthesiologist were getting his port ready for the sedation medicine.


Okay, I think I"m ready. That's what Max said when he was feeling the medicine and ready to be laid down.



This is Max, sedated and ready for radiation to his skull. They let me come in for one quick photo.


After radiation, which isn't long at all, Max comes to the (recovery) room to wake up. He laid there for a bit and the nurses thought he was probably already awake and just listening to everything we were saying. I guess we'll never really know. Once awake, it was time to eat. Time to eat the food that Mom packed for him...and time to eat the food (nutrients) that gets pushed right into his belly (via the g-tube aka his button).

May 16th. I was to photograph Max getting transfused with platelets and possibly red blood cells. It ended up that he received both but I wasn't able to photograph either because I couldn't stay long enough. However, I was able to capture some other moments of Max and Melissa.

I think this image is important because many don't realize how much time is actually spent by Max (and his family) in the hospital. Hours and hours. And sometimes days.

Here, Max was showing his transfusion nurse where his current pain level is at, by pointing to one of the faces on the pain chart.

Melissa wanted to speak to the MD about Max's continued pain. We went to another room, where we had to wait a bit. Max was sad that he didn't have his drawing materials and that the MD was taking so long. He also got a bit frustrated with his Star Wars guy (he wouldn't stand). A little breakdown resulted.

Here, Meliss was snuggling with Max, telling him it's okay to be sad. And it's okay to cry. Shortly after this, the MD arrived.



And here's another one of Max's (your photographing time is done and I'll give you one last look) looks. The last shot of the day ;-)

Then it happened. I decided to ask the Mikulaks if they would be interested in me photographing Max weekly. I really didn't know how to ask...but I just did. Straight and to the point. I can't imagine what they go through and I didn't want the world to just see the pretty portraits of Max and neuroblastoma. Let's show the world the real deal--well as much as I can with three kids, a husband who's gone all the time and a photography business. So I asked Andy and Melis if they would be interested in me coming one morning a week (when the little ones are at preschool) and shooting whatever is going on that morning. They not only agreed, they were excited about the journey. What do I hope to do in photographing Max weekly? I hope to bring more attention to neuroblastoma. I hope to show everything--the good, the bad, the ugly. I hope to bring some photographs to what the Mikulaks write on Max's blog. I hope to gain awareness and funding for neuroblastoma and pediatric cancer research. I hope capture the essence of who Max is, his strength and what he is going through. I hope to give the Mikulak family some photographs that they can forever cherish.

I am shooting Max weekly. Whatever is happening. Nothing is planned. I have no idea where this journey will take us...no one knows.

On May 10th, Max participated in San Diego's Celebration for Champions. I knew this was an important day to capture. And luckily, I had a client reschedule and happened to be available. Max was number 27 and sponsored by Rady Childrne's Hospital.


You have to imagine...
I arrived to the tune of the 'chariots of fire' theme song. I immediately began to cry but knew I had to pull myself together and put on my face of strength. And I did. But then another lady started talking to me, asking me who I was and what I was doing, and I couldn't help but cry as I described Max and his family and what I was doing with them.

I asked Max not to run too fast as how would I photograph him if he did. He told me, I'm running fast. And he did! So strong. So proud. So fast.


At the completion of the race...Max and his team.