...didn't quite happen, as far as shooting Max goes. Max ended up having to go to the hospital this morning because he woke up with a fat and bleeding lip. He also ended up getting blood and platelet transfusions. I'm happy to say that Max and his lip are doing fine (per Melis).


I didn't call Melis before heading to their house to shoot Max today and when I arrived, Andy's Dad answered the door (Max and Melis were at the hospital). I...wearing my braids, sunglasses and cowboy hat, walked in and started yip-yapping. He...stared at me, wondering who the hell just walked in the door, with a little boy (my son) in tow. It wasn't until I took off my sunglasses that he recognized who I was and we just laughed.

Called Melis on my way back home and we're working on setting up another day to shoot later this week. Melis and Max ended up meeting with the Hospice Nurse and Doctor at the hospital, so I will be photographing something else.

Just thought I'd update so those who read the post yesterday weren't wondering where the post and photos were today.
Today, we (my husband, son and I) met the Mikulak family at Starbucks and then went to Del Mar's Powerhouse Park. When I arrived, Max was sitting in his Dad's lap but soon hopped up to tell his Mom something...

...and then snuggled back into Dad's lap. This whole series melts my heart. Max hopped up and then wrapped his Dad's arms around him...and had to get them just right.

And then the cuddle was just right...

But it didn't last for long b/c Max had to get up to tell Mom that his button (g-tube) was leaking really bad. Mom (and Nicky) checked it out and it was. Max also wanted his wheelchair. And he was really happy when Mom said that she would go home, get Max's wheelchair and stuff to fix his button, and meet us at the park.

I just love this moment between Max and his Mom...

So Andy, Max, Steve, Ryder and I walked to the park, while Melis and Hannah went back home to get Max's wheelchair. Max decided that he wanted to play on the rocks for a bit before going to play at the park. Of course, the other two boys weren't going to complain about climbing rocks.

Max was really excited about the squirrels and kept 'shooting' them. We learned that what Max was really doing was...taking pictures of the squirrels. Of course, I thought this was so cute..."Dad, I just got a picture of the squirrel up really close", as he pointed his "shooter" at the squirrel.

I loved this moment where Max and Nicky were looking at the squirrels behind the rope.

Then it was time to go to the park because Mom had parked the car and she and Hannah were on their way with the wheelchair.

Max hopped right in the wheelchair and wanted to be covered with his blanket. Everyone kept asking him if he was okay with the blanket on because we were all sweating. Max kept saying that he was fine. He was just happy to sit in his chair and play with his basket of Star Wars figures. I asked Andy if Max was using his wheelchair more lately. He told me yes, but he thinks it also may now be a bit of a crutch. I commented that maybe it's a bit of a security blanket for him...things just feel better when his wheelchair is there. But Max did tell me when we were at Starbucks that his legs were hurting today.

And then Max was ready to go. "Let's go. I'm really, really tired.", Max said to his Mom. The shot below of Mom caressing Max's cheek is another moment that just melts my heart.

Off we went...
And all of a sudden Max got a second wind and was ready to go swimming ;-)

I will be shooting Max again tomorrow afternoon. It's the first time that Max is meeting with his Hospice care providers (Nurse and Doctor) and I want to capture it. The Mikulaks signed on with Hospice to give the family a break from being at the hospital so much. The Nurse will come to their home, draw any needed labs and then send them to Children's Hospital. Then the hospital will call the Mikulaks with the results. If a transfusion is necessary, they will go to the hospital.
Yesterday, I arrived at Reach for the Stars cancer camp. I arrived to see a group of kids petting an armadillo. I was looking...looking all around, but no Max. Finally someone came and asked if they could help me.
Hi, I'm looking for Max.
Oh, you're the one that photographs him.
He's in the med shed.
I'll take you there.

She took me to the med shed and this is what I first saw...Max laying on a cot. The nurse told me that Max wasn't feeling well and was bored. I think it was more not feeling well than bored, but that's what Max said.

Then the nurse asked the Director, if she would get Max an airplane to make. It's amazing how much this boy loves WWII stuff. He lit up when the got the plane to make.

It was also time to eat (via his g-tube). Max knows the drill and hooks himself up. And the nurse told me that she was going to give Max some medicine to help him feel a bit better.

Then it was all about making his planes. Max's first plane, a Japanese one. The second was the American. Max so concentrates on the details of his planes. There was a couple times when I asked him if he was okay, to find out that he was just thinking about what he was going to draw. He gets every detail down.

And as usual, I told Max I was going and asked him for one last shot. And as cute as could be, he was all about it...and all smiles. He melts my heart!

But then Max started playing with his planes and I snapped a few more. He saw me but didn't seem to mind.

And the view...
as I was leaving the med shed.
if you read max's regular blog, you already know that max is in the hospital for a neutropenic fever. today, i went and photographed max in his hospital room. this is what i saw when i arrived...max laying in bed, all covered up with his 'couch blanket' from home, and his mom reading him a story (and a bunch of infusion bags and pumps).

melis was reading max little house on the prairie. seeing the joy on max's face as his mom reads to him is such an amazing thing to witness. i'm not sure i can even put it into words but...mom reads. max smiles. he laughs. max stares off as he envisions the words he hears his mom read. mom shows him the pictures. max asks questions. more smiles and giggles from both.

melis told me that max can be sobbing, in pain...and she can pull out a book and start reading to him and it will help him calm down. reading is their special medicine.

then max said, mommy, my legs really hurt. melis told max that he doesn't have to sit in pain and he should tell her right away...tell her right away, when the pain first starts so she can get him medicine to help the pain before it 'really hurts'. melis hit the call bell and asked the nurse for some pain medicine. the nurse came in and asked, the big lortab or the small one? the big one please. the nurse left and when she came back, she dropped off the syringe of yellow medicine at max's bedside. i'm assuming this is something that regularly happens b/c it all transpired pretty naturally...the nurse dropping off the pain med and melissa giving it to max. melis disconnected max's g-tube feeding and gave the lortab through his g-tube. it was followed by a flush of saline, which seemed to bother max a bit. that's enough mommy. that's enough.

after the medicine, melis got back to reading. i'm not sure what the section of the book was about, but i heard the following:
mommy, what is heaven?
what is heaven?
yea, what is heaven?.

heaven is where people go when they die. like grandma. grandma xxx is in heaven.

and reading begins again.

but the reading didn't last for long. melis told max that she needed a little break from reading and asked max if he was tired. max was. melis said that maybe they could take a little break from reading so max could rest. max turned his head to the side and shut his eyes. and melis teared up. we glanced at one another. not a word spoken. melis wiped away her tears. the phone rang. a call that melis had to answer. and with tears in my eyes and a lump in my throat, i went back to shooting.

i've never seen this happen. through everything that we've talked about and everything i've witnessed, i've never seen melis anything but amazingly strong. i've never heard a quiver in her voice. i've never seen a tear shed.

and in saying that, this was a moment that melis showed the most amazing strength.

and then max slept. i took a few more shots of max sleeping and then my time photographing max was done.