Mashed Potatoes For Breakfast

All the Max photos by Deb

noreply@blogger.com (Andy (Max's Dad)) — Thu, 18 Jun 2009 05:19:00 +0000

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 while he was alive have been on Flickr for some time now, so click here or click on Max to go see all of them. We miss Max so much as his birthday approaches June 30. But the photos here 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.

honoring Max

noreply@blogger.com (deb schwedhelm photography) — Fri, 12 Sep 2008 02:14:00 +0000

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

the celebration of max's life

noreply@blogger.com (deb schwedhelm photography) — Sun, 07 Sep 2008 19:30:00 +0000

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).

celebrating max's life

noreply@blogger.com (deb schwedhelm photography) — Sat, 06 Sep 2008 21:59:00 +0000

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.

I will miss him so much

noreply@blogger.com (deb schwedhelm photography) — Tue, 02 Sep 2008 07:11:00 +0000

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 is an angel

noreply@blogger.com (Andy (Max's Dad)) — Mon, 01 Sep 2008 18:15:00 +0000

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?

first day of school

noreply@blogger.com (deb schwedhelm photography) — Mon, 25 Aug 2008 17:37:00 +0000

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.

not so musical

noreply@blogger.com (deb schwedhelm photography) — Wed, 20 Aug 2008 04:35:00 +0000

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.

caution: chemotherapy

noreply@blogger.com (deb schwedhelm photography) — Fri, 15 Aug 2008 15:32:00 +0000

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.

family photos

noreply@blogger.com (deb schwedhelm photography) — Mon, 11 Aug 2008 17:15:00 +0000

We had family photos on both our schedules for about two weeks...Sunday, August 10th at 8 AM. Not knowing how Max was doing, after a week of Disneyland, I called Melissa on Saturday to check. She said that Max was doing pretty good but sleeping a ton and moody. She mentioned that Max was waking up later than usual and taking 4-5 hour naps during the day. Because of this, I told Melissa that I would just be on call for them. She could call me Sunday, when Max wakes up and is in a good mood and then, whatever time that is, I would meet them at PB Pier for our shoot. And that's what we did.

Melis called Sunday at 8:30 AM, to tell me that Max was sleeping. He had woken up at 4 AM and was up for a while. I told her to just call when Max woke up and we could meet then. She called around 9:30 AM and we met at the Pier around 10 AM. They arrived, pushing Max in a jogging stroller. I was sad to hear that Max can't walk at all right now. I later discovered that it was painful for Max to put any pressure on his feet/legs. We got down to the Pier and really, our only focus was to get one good family shot.

Max was such a trooper. He smiled for all the family shots. Once I knew I got one good shot, I told them we were done. I didn't want to push...one was all I needed. But, I'm excited to say that I got more than one for them.

I asked Melis about Max's increased pain and fatigue. She is suspecting that all his sleeping is due to the increased pain medication they've been giving him lately. And they were trying to taper off his Decadron, which they suspect might be causing his increased pain. So they gave him a large dose of Decadron on Sunday (Decadron causes Max lots of moodiness), hoping that that will help his pain and they can cut back on the pain medication, which is causing his increased fatigue. It truly is a balancing act for them...trying to find the right mix, to best help Max as a whole.

I wasn't able to edit any photos last night and just finished editing this family shot. I plan to edit more this evening but wanted to get this one posted.

More later today!

ETA (2 PM):
Here's Max in the jogging stroller. He had to stay in the stroller because his legs hurt so much.

Another family photo...

Max agreed to do a few shots with just him. Andy had to pick him up and put him over by the pier post. Andy, at one point, had to reposition and gently put Max on his feet, and Max said, "Ow..ow...ow Daddy. My legs hurt so bad". Max wanted to keep his storm trooper and who was I to argue...I just incorporated him in the shot.

But as I said earlier in the post, the Decadron that Max is taking makes him really moody and Max went from doing okay to being really sad and done, in an instant.

Max, waiting for us to pack everything up.

And a picture I took of Max's storm trooper. Seeing the image on my camera made Max smile. And even if for just a moment, there's nothing better than seeing him happy. I promised Max a print for his room. He just loves Star Wars.

First Home Visit

noreply@blogger.com (deb schwedhelm photography) — Fri, 01 Aug 2008 15:55:00 +0000

When I showed up to the Mikulak house yesterday, the kids had just come home from camp and were watching cartoons on the couch. One thing that I've noticed is that Max's throw up bowl (tupperware bowl with his name on it) seems to always be by his side and when it's not, he asks his Mom to go get it. Also note his special couch blanket.

Then I hear:
No kitty.
Kitty no. That stays outside.
Kitty.
NO.
KITTY.

I go over to see what Naboo has and this lizard comes wriggling towards me (I hate bugs, lizards, etc.) and I end up jumping on the table...literally. Max came running to see what Naboo was up to too. Seeing what Naboo had done and watching his Mom chase around the lizard with a paper towel in hand made Max laugh. Melis caught the lizard and threw it back outside. Then I tried to get a photo of Max with Naboo but Naboo had other things on his mind (most likely catching his next lizard).

Then the hospice nurses arrived to change Max's button (g-tube), which has been leaking, and to access his port for lab work. Melis decided that the best place to do it was in Max's bedroom. Max has trouble walking up the stairs and needs Mom's help.

At the top of the stairs is an entire wall of Max and Hannah, beginning at about age 2. (Nicky hasn't quite made it to the wall yet). This is one photograph on that wall. Not sure what age Max is here.

This is the hospice nurse talking to Melis and Max about what she's going to do. She kept trying to talk to Max, asking him questions, but he wasn't much up for answering. I'm sure he just wanted her to do her thing and get it over with.

The nurse showing Max his new g-tube.

And then it was time for the g-tube swap out. The nurse removes the water that is inflating the g-tube balloon, which holds the g-tube securely in place. She removes the old one and puts the new one in the hole. And then inflates the balloon. It all happens very quickly and seems to be with no pain.

I thought it was neat that the nurse talked to Max a lot about his g-tube and asked him if he wanted to see the old one. He was pretty excited to see it. She also let him see what it's like with the balloon filled. Melis said that in 3 1/2 years of having his g-tube, he never got to actually see one.

Then it was time for the port access, something Max doesn't like. Mom helps him get his shirt off.

And the nurse prepares her equipment and talks to Max about what she's going to do.

At one point, Mom had to step out of the room for a minute and the nurse was talking to Max. I think she said that she had everything ready and Max said, I just need to hold my Mom's hand. I just need my Mom. She said she would never start without his Mom being there.

And then it was time to access Max's port. About 30 minutes prior, Max had a cream put on that numbs the area a bit. I'm not sure how well the cream works but I know it's used a ton with kids. Max never likes his port being accessed but Melis said that he reacted a bit worse than usual yesterday.

After the blood draw, Mom asked Max if he wanted a band-aid. Yes, he wanted sponge bob.

After everything was done, what did Max want? One of his airplanes, of course. I think it was an F-15, to be exact.

And off he went.

It's hard for me to comment on photos (other than describing the moment) or even share my thoughts in general, as I worry about not saying things right or offending someone. But, one thing that I've been thinking about is how we hate to see our children in the hospital or in pain once a year, once every couple years. These parents often see their children in pain or in the hospital numerous times a week. I just can't imagine. I know you just do it. You do it...you remain strong...for your child. You hope with everything you have to hope with. You fight with everything you have to fight with.

The Mikulak family will be at Disneyland all next week. The next time I shoot Max will be next Sunday, when I'm going to do a formal family session for them, at the beach. I have been encouraging Andy and Melis to do family photos for a while now and glad that we are finally going to do so.

Today...

noreply@blogger.com (deb schwedhelm photography) — Tue, 29 Jul 2008 05:03:00 +0000

...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.

Powerhouse Park

noreply@blogger.com (deb schwedhelm photography) — Mon, 28 Jul 2008 00:10:00 +0000

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.

cancer camp

noreply@blogger.com (deb schwedhelm photography) — Sun, 20 Jul 2008 02:56:00 +0000

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.
Yes.
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.

mommy, what is heaven?

noreply@blogger.com (deb schwedhelm photography) — Tue, 08 Jul 2008 04:52:00 +0000

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?.
[pause]
heaven is where people go when they die. like grandma. grandma xxx is in heaven.
[pause]

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.

happy birthday!

noreply@blogger.com (deb schwedhelm photography) — Tue, 01 Jul 2008 06:59:00 +0000

Today, Max turns seven! Yesterday (Sunday), was his Indiana Jones Temple of Fun birthday party. :-)

When I arrived (around 11 AM), the kids were still working on their treasure hunt. Here, the kids were working together to put together the pieces of the puzzle to get to the next clue location.

And here, they kids were traversing the alligator filled water, picking up two bombs (water balloons) on their way--bombs that were later used to throw at the masked bad guys (the parents). Max was the first one to make the attack on the bad guys. The kids had such a blast and it was so fun to watch.

Next was putting together airplanes. Most of you probably know that Max is a WWII fanatic, with a huge love for WWII aircraft. Max needed to concentrate putting his together so he moved to the window sill (of course, I followed). After his plane was together, he snuck upstairs (a couple other kids followed) to throw his plane down...until Mom called all the kids back down.

Then came the pinata. First, Mom laid down the rules. You can tell all the kids really enjoyed that part ;-) Of course, Max was first to bat.

After Max's turn with the pinata was done, he went over to stand with his Mom and Dad.

Then I saw Max go off to get this stool to sit on. My guess is that his feet and legs needed a little break (he mentioned that they were bothering him a bit earlier).

The pinata finally broke open.

After the pinata, Max went to the lounge chair for some alone time...a little break.

Time for the cake. Such a special moment--Max had so many wonderful expressions during the entire cake time. It was so wonderful to watch and capture.

And then I think exhaustion hit. Max went off to this chair and was really quiet. He was messing with his stomach a bit and Mom came over and asked if his button was okay (he said it was). And Dad came over to check on him too.

Soon, Max said that he was done with pictures. This is something that I respect, as I don't want him to get frustrated with my presence. I reminded Max that he never has to perform, smile or anything for my camera; he can always just do his own thing. He said he knew. I asked for that one last shot. Sure, he said...and gave me this, a shot I so adore.

After that, I asked Max if I could take one last picture of his presents. He said yes. And I did.

It was an amazing party, one that I'm so thankful that I was able to be at and capture for the Mikulak family. Happy, happy birthday Max!

king of the castle

noreply@blogger.com (deb schwedhelm photography) — Tue, 24 Jun 2008 07:21:00 +0000

At the beginning of every week, Melissa emails me Max's schedule so I know what is going on when. This week, she also shared that Max has been very moody, sullen, angry, sleepy and dizzy lately. We're adjusting his pain medications, which are most likely the culprits. Hopefully by the end of the week we'll have our Max back. When I got to the hospital, I was so happy to see that Max was in pretty good spirits...and he looked good too.

Today, I photographed Max at Rady's Children's Hospital getting transfusions. Max is transfusion dependent right now, receiving platelets every 3-5 days and red blood cells every 1-2 weeks. Spending around 4-6 hours per transfusion, this space...and these people are a huge part of their lives.

One of the things that I have discovered in photographing Max is his love for legos. Almost every time I've seen him, he's had some type of legos to play with. Today it was a king and his castle.

Shortly after starting to play with the legos, Max's button (as he refers to his g-tube) started leaking. He did his best to take care of the leaking himself...telling his Mom that he didn't need gauze...but Max quickly decided that the gauze sounded like a better idea than kleenex that was falling apart as he wrapped it around his button. So Mom got some gauze and showed Max how best to put it on, since it's different gauze than what they use at home.

Then it was time for red blood cells.

Max decided that he had enough of legos and wanted to move on to his other love (which might actually be a greater love than legos), computer games. Melissa set him up and he was on his way. I didn't see him smile a lot while I was there, except when he was winning the game. He's very animated while playing. Winning made him happy. Losing made him...not so happy.

I love that when Max concentrates, his tongue moves all over the place. I saw it in school and now here, playing his computer game. I couldn't help but grab a shot of it. Also, I noticed the scabs on Max's face and asked Melissa about them. She said that they are because of his platelets being so low. He gets any little scratch or anything and then it bleeds and it's just hard for Max not to pick them.

As usual, I asked Max for one parting shot...

and then my time was done.

For more in-depth updates about Max's cancer, don't forget to check Max's regular blog here.

ETA: I just realized that today has become yesterday. These shots were actually from yesterday, Monday, June 23rd. :-)

the angel in the sky

noreply@blogger.com (deb schwedhelm photography) — Sat, 14 Jun 2008 16:33:00 +0000

I posted this on my blog before but wanted to post here too, since someone commented in the previous post, inquiring when this angel print is going to be available for purchase. The answer is HOPEFULLY soon.

The story behind this image can be found here

Yes, the plan is that we want to sell prints of this angel in the sky photograph, with all proceeds going to The Magic Water Project. However, there are some logistic challenges we need to overcome and we're now looking for a printer that would be willing to donate the printing of these photographs. If, by some chance, you know of a printer that would be willing, please contact me. Until then, I will keep looking.

Thanks for asking about the image.

his wheelchair

noreply@blogger.com (deb schwedhelm photography) — Mon, 09 Jun 2008 21:26:00 +0000

Let me start by saying today was tough for me. Well, today was tough for Max too. I cried during recess. I cried my entire way home. I cried while I was editing. It's just not $^*&(%# fair!

I called Melissa this morning to see what was going on today. No matter what, I knew I had to shoot Max today because the rest of my week is so swamped. Melissa said that Max was in school all day so...shooting at school it was.

I arrived shortly before lunch and when I walked in the door, Max was flushing his g-tube. I'm assuming he does this daily at school, a certain amount of time before lunch. I also saw Max's wheelchair. I knew he was in his wheelchair today because Melis had told me but still...I was saddened when I saw it there. I also noted that Max was holding his leg. And then Lisa, Max's teacher, told me that he was having quite a bit of pain today.

While all the other kids go to the school lunchroom, Max goes to the nurse's office for lunch. Why? Because Max gets his nutrition via his g-tube. I think usually Max and a chosen buddy walk to the nurse's office together but due to Max being in the wheelchair, the nurse comes and picks him up. A buddy still tags along and it's so cute to see how many kids raise their hand, hoping they're the one that Max picks.

It was hard for me to watch Max get out of the wheelchair because his left leg was hurting him so much. But he didn't want help...from anyone. Once on the bed, Max said, "my leg really hurts". One thing that was so nice to see is that everyone at the school has Max's care so well taken care of. They all know exactly what to do. After Max mentioning that his leg was really hurting, the nurse immediately got on the phone and called Mom, asking if she could give Max more pain medication.

And yes, she was able to. And she did. She clamped the tube feeding, injected the pain medicine into the g-tube and then reconnected Max's nutrition. He also complained of nausea and got some anti-nausea medicine.

Max LOVES to draw. I think he has drawn every time I've seen him. And I so loved seeing an envelope of his drawings pasted up above the head of the bed in the nurse's office.

I also wanted to share this shot of Max's braces, which help strengthen his ankles.

After a bit, Max said, I need to lay down. I'm not really sure what prompted this...his pain medication? the nausea? the pain? I really don't know.

But it didn't take long and Max was telling stories and smiling. We talked a lot today about bugs. He seems to like them. This shot was when he was talking to his classmate. I just loved seeing the sparkle in his eye as he talked to her.

I also noticed how much more color Max had today versus the day I had photographed him getting platelets and blood.

And Max's g-tube. He was so proud to tell me about how this button doesn't leak and isn't messy. He said that his old one was but this was a new one. And Max turns off his nutrition himself. If he feels like he's getting too full or is nauseous, even after getting anti-nausea medication, he will clamp the tube to turn off the feeding. Here, he was helping the nurse disconnect everything.

After lunch, if Max is feeling well enough, he goes and plays with the other kids at recess. The nurse wheels Max out of the office and then Max's teacher (who is with him in the office much of the time during his feeding), wheels him out to the playground. I wanted to share this photo of the nurse wheeling Max out because you can really the bald area on Max's head, where the radiation was done.

Once we got out on the playground, Lisa asked someone to get the shuffleboard out for Max to play with. It was so great to see all the kids come and play with Max. Most of the time, he was surrounded by girls. ;-)

It was all bittersweet for me. It was so wonderful to see Max having such a great time with his friends, in spite of the wheelchair. But I was also so saddened by the day...watching Max in pain, hearing him express that he's hurting, and seeing him in the wheelchair. It was just really hard to see and hear!

I try so hard not to cry in front of Max but I couldn't help it today. I turned away and did the best I could to recompose. Today, I knew my time was done with Max, without him even telling me. I did recompose (if only for a moment) and asked Max for my one last shot. He sat there so proud...and smiled. And it didn't take long for my tears to start falling again.

What an amazing little boy!

ETA: I always email the Mikulak's the day's photos and today, I had mentioned that I cried and cried and cried about Max. Melis shared that while the pictures are true to life, it's important to keep in mind that the pain that Max is experiencing right now is presumably due to one of his chemo-meds and not caused by the disease. While this information doesn't make the pain any less real, it does make it a bit easier to swallow.

Sharing some words from Melissa--
Wipe those tears away and be happy with today. Live life to the Max.
There is little time for tears when there is so much to be thankful for.

blood and platelets

noreply@blogger.com (deb schwedhelm photography) — Mon, 02 Jun 2008 23:37:00 +0000

According to Max's Mom, Melissa, today was Max's last day of chemo for this cycle (for a week or so) and his last day of radiation for a while. I'm not a cancer/radiation expert (by any means) and I'm sure more information will be posted on Max's regular blog, but from what I understand, radiation (and chemo) really takes a toll on one's bone marrow, so only so much radiation can be given. And this is why Max has been needing relatively frequent blood and platelet transfusions. He received both, platelets and blood, last week and again today. Today, Max's hemoglobin was 6.4, when normal range for a child his age is 12-14. So Max's blood counts were really low.

When I arrived at Rady Children's Hospital today, platelets were done and red blood cells were on their way. Max was reading. Melis and I began talking a bit and Max quickly told us to be quiet because he was reading. I was secretly glad he told me to be quiet because I went in today thinking, I have to try and not talk much so I can truly just capture what naturally happens. Of course, I AM there; I will never be invisible...but I hope that as the weeks pass, my camera and I will become less and less noticed.

Max...
His face looked puffy and he was pale. I was sad to see him so puffy. I asked Melissa if the steroids were making him puffy. She said that he's now off the steroids and a lot less swollen than he was. He must have started swelling after I had done the session last week because I didn't notice much swelling when I shot him last. Max was a bit grumpy when I first arrived (I don't blame him with blood counts as low as his were...anyone would be tired and grumpy). Here, he was getting upset because he didn't want any visitors. That was my cue to step back and give Max his space and well...shut up.

Then the blood came. It's nothing for Max. He just continues doing what he's doing, completely unaffected by the nurse and what she's doing.

After a while, having just recently learned to read, Max got tired and asked his Mom to read the book to him. It was so wonderful to see. He listened...and kept his eye on me. One of the things to keep in mind is that, when getting blood, Max is there for at least 4 hours...that's the minumum. Often it can be more like 6-7 hours.
[max's dad] Whether you view these pictures as sad or normal, for Max he has recently began to look forward to "hospital days" for the reasons you see below: mom reading to him, kicking back on a bed, his WWII books and "Bruce" nearby. What 6-yo boy at some point in his day wouldn't rather be doing what Max is doing instead of sitting in a classroom?

This is Max, while he was listening to his Mom read to him. I'm not sure why but he was messing a lot with his mouth and lips today. I don't know if it was just a habit thing or maybe a developing sore or something. ETA: I spoke to Melissa after posting and she told me that with Max's platelets being so low, his lips become dry and chapped and he ends up messing with them. He doesn't have any sore.

As I've said before, Max always lets me know when he's had enough of me and my camera. That's enough pictures for today, is usually what I hear. And I listen. I always ask him for one departing shot and so far, he's always given me that one last shot...where he looks at me and smiles. And when he does, I always melt. Okay...so I took two. I couldn't resist taking a photo of him with his shark, Bruce, who he brought with him today. But Max let me know that I took two...not one last shot, like I asked ;-) I told him that I couldn't help myself b/c he's so darn cute.
[max's dad] I'm struck by how pale Max looks in these photos. Part of that is b/c Max is laying on white sheets... with a light-tan shirt on... under bright flourescent lighting. But Max is our white boy for sure. Just recently we were all outside in our front yard, and Max is looking around at his family and all of a sudden said something like, 'I have the lightest skin in our family."

I wanted to close with something that I read off Will's blog today (from a post on September 20, 2006, about their son, who is also battling relapsed neuroblastoma)...
According to the head of the pediatric oncology program at Dana Farber this means that Will is now classified as 'incurable' and the best we can hope for is to delay the inevitable with various kinds of treatments.

This is what these parents are dealing with--not trying to cure their child of this cancer. No, they have already been told that that is not possible. What they are trying to do is buy time and as Will's Dad stated, delay the inevitable, or hopefully discover some miraculous treatment that can stop the tumor(s) from growing/spreading and let these children live their lives into adulthood. But, this will never happen without funding and research. I hope that I can do my little part in bringing awareness to neuroblastoma and hopefully funding for additional research--in hopes of one day finding that miraculous treatment that will let these kids live.

Home Depot and cakes

noreply@blogger.com (deb schwedhelm photography) — Fri, 30 May 2008 08:20:00 +0000

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.

Max effort

noreply@blogger.com (deb schwedhelm photography) — Tue, 27 May 2008 00:58:00 +0000

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 ;-)

always do your best!

noreply@blogger.com (deb schwedhelm photography) — Fri, 23 May 2008 03:58:00 +0000

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!

radiation day(s).

noreply@blogger.com (deb schwedhelm photography) — Thu, 22 May 2008 01:56:00 +0000

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).

Transfusions.

noreply@blogger.com (deb schwedhelm photography) — Fri, 16 May 2008 17:25:00 +0000

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 ;-)