9/23/2008

Three

Nicky turned three on September 13. His birthday party was held however, on August 31, the day Max died. That afternoon, Max joined the rest of the family for a few minutes outside. Otherwise, the rest of the day he and I were on the couch together. I'm still stunned that he died that evening. I guess I always will be.

File under 'retrospective': I thought it would be interesting to look at some pictures and remember what Max was doing when he was three years old.

He was driving cars at Legoland...


riding horsey rides...


motorcycles...


and bumper boats... all by himself.


But he went on the crazy, spinny rides with crazy, spinny, big-sister Hannah.


He also like water slides...


... and sharks.

Casa Blanca Salon and Day Spa in Rancho Santa Fe will be hosting a fundraising event to benefit the Magic Water Foundation

So many thanks to those that continue to raise money and help keep alive the cause that we fought so hard for on behalf of Max over the past two years.

http://www.delmartimes.net/news/248810-event-benefits-childhood-cancer-foundation

9/19/2008

2004



I'm enjoying immensely the process of looking not into the immediate past but into the (relatively) more distant past. Though I cling to the most recent memories and images of Max, looking back through the years I guess provides a little bit of a buffer to the more recent images which are more painful to view.







At Cardiff State Beach, October 2004, just prior to Max's neuroblastoma being diagnosed.

Disneyland August 2008


Officially, our last photo together as a family. Taken at early entry to Disneyland on Thursday, August 7, 2008. If only we had known this picture would be the last one together... but then I guess that's the point of the phrase, "live like there's no tomorrow, dream as if you'll live forever."

9/17/2008

"Blitzkrieg Bop"



Hey ho, let's go
Hey ho, let's go
They're forming in a straight line
They're going through a tight wind
The kids are losing their minds
The Blitzkrieg Bop
They're piling in the back seat
They're generating steam heat
Pulsating to the back beat
The Blitzkrieg Bop.
Hey ho, let's go
Shoot'em in the back now
What they want, I don't know
They're all reved up and ready to go

Max's Krazy Kar Kapers

Sorry, nothing much to say today. Missing Max incredibly.

The previous Mig-23 Tigershark drawing of Max made a couple of, well, let's just say "immature" readers of this blog giggle a bit at the joyous smiles of the two pilots as they flew faster than the speed of sound while blasting their enemies to smithereens (sounds like a parent's view of good chemo). So in the spirit of showing a bit more of the twisted mind of Max, a selection taken from Max's last birthday card to Melissa, just this past May. The other two illustrations were of Max and mommy buying a video game for Max, together. And the two of them eating ice cream cones and watching TV together.

9/15/2008

Max is an alligator


Email sent today from Max's teacher, Lisa:

"The kids are really missing Max. They don't like his empty chair, too much of a reminder I think, so they've taken to putting Larry the stuffed alligator in it. But they call it Max and make sure he has the right folder out, etc when we're working. Interesting how kids grieve... They've also been rereading some of the grief books we've read. Your sweet boy is sorely missed!"

I'm sure Max is very happy with his classmate's selection of his proxy.

Halloween 2006.... sigh!



Loss for Words

A note from Melis...

A very nice mom friend of mine came up to me this weekend and expressed her sorrow for our family and apologized for not talking to me sooner - but she simply didn't know what to say. I know this is troubling everyone - even me. I don't know what to say either.

Please know that a seemingly simple "I'm sorry" and a hug is huge. Really. I'll see you this week.

9/11/2008

Tribute to Max in Carmel Valley News

Family and friends gather to celebrate the life of beloved 7-year-old Max Mikulak
By Catherine Kolonko

Young Max loved power and strength like any little boy. It gave him inspiration.

And so when a large contingent of his family and friends gathered at a Del Mar park Sunday to celebrate his short but full life, two biplanes plowed through the sky in a show of might that would make Max smile. Their engines roared and the crowd cheered and applauded for 7-year-old Max Mikulak who died recently after a 4-year battle with cancer.

“He was just a really sweet, nice little boy,” said Max’s mother Melissa Mikulak, who wore his Indiana Jones ball cap that he received in June for his birthday.

“It was a beautiful day,” the boy’s father, Andy Mikulak, said about the gathering in Max’s name. “Everything we wanted to happen obviously happened. It was the right way to honor him.”

In 2004 Max was diagnosed with high-risk Stage 4 neuroblastoma, an aggressive pediatric cancer that is difficult to cure. For about a year after traditional treatment the disease disappeared, but it returned in 2006.

The Mikulaks of Carmel Valley chronicled Max’s struggles and triumphs with his disease on an Internet blog read widely by family and friends and even strangers in other states. A video clip captured happier times of Max cheerfully singing “Ring of Fire” into a karaoke microphone. Then, sadly the couple posted this entry less than a week before he died on Aug. 31.

“Max is dying. He has been dying for some time, of course. Since 2004, he has been battling a cancer that had a terrible cure rate to start with, then he relapsed in 2006, then progressed this summer. Now, the neuroblastoma seems to be spreading rapidly to soft-tissue areas of his abdomen (liver, kidneys), despite continual treatment.”

Another post was a quote from Max’s sister Hannah.

“If I had a wish, I would wish that Max's cancer would go away and stay away forever.”

The wish, no doubt, of everyone who came to Seagrove Park and shared laughter and some tears as they remembered Max that day. Most importantly, Max’s parents wanted a celebration of Max’s life and his good and loving nature, maintained until the end despite his painful struggles.

Two large photographs of a beaming Max flanked a microphone where several people spoke about the boy and how he touched their lives. Lisa Sturt, Max’s teacher at Solana Highlands Elementary, told the crowd that everyone who met him immediately fell in love with him.“

And how could one not? He was light and goodness and joy… an angel in our midst,” she said. His enthusiasm and smile were infectious, she said.

“If asked to do something, he’d respond, “Aye, aye Captain!”

All around the gathering there were symbols of Max and the things he loved. Many who attended wore orange, his favorite color. Others wore references to his favorite movies, “Star Wars and Indiana Jones.” A table held model airplanes, a toy train, treasure chest and dinosaur and photographs of a happy Max, including one with famous skater Tony Hawk in motion.

In another display of might, a trained hawk flew over onlookers and then perched in a nearby tree. For a finale, the meat-eating bird flew to its trainer and snatched a morsel from his hand. Earlier, Max’s fellow cub scouts performed a mock aerial salute. Each hoisted a toy jet above his head and marched as if in a missing man formation traditionally flown in memory of a fallen pilot.

Wanting to save his son and other children from cancer’s awful clutch, Andy Mikulak cofounded the MagicWater Project with Neil Hutchinson who also has a son with the same disease. It is a foundation dedicated to working with cancer researchers and oncologist to accelerate discoveries of potentially life-saving new drugs for children with relapsed neuroblastoma and medulloblastoma. The project funds clinical trials and other research on innovative, low toxicity treatments.

The day after the celebration for Max, a few hundred people participated in a walk in Balboa Park to raise money for the MagicWater Project. Just over $18,000 was collected from the fundraiser, which was sponsored by RealAge.com, Andy Mikulak’s employer.

More money is still coming in from the fundraiser and it will go toward the purchase of new imaging equipment at Rady Children’s Hospital that could provide quicker scans and results in the detection of cancer.

Andy Mikulak said he will turn his attention to raising the additional money needed to buy the scanner for Children’s Hospital, he said. While the money raised from the walk is symbolically significant it is only about 10 percent of the roughly $1.5 million estimated cost.

The Mikulaks plan to continue their efforts in the battle against childhood cancer and say they want their son to be remembered most of all for his loveable character.

Although Max could behave like a typical boy there was never any meanness to him, recalled his father. Throughout his struggles Max was always happiest when everyone around him was happy.

For Melissa, Max had a purpose that she wants others to remember: To live life to the fullest “because time is precious” she said. Then she repeated the words of encouragement so familiarly linked to their good-natured son, “We really did encourage him to live life to the max,” she said.

-- please let the Carmel Valley News know (email) if you enjoyed this tribute to Max, the reporter Catherine did a very nice, sensitive job covering both events and we thank them tremendously for such good, caring work --

9/07/2008

1st Post about the Celebration

I don't think Andy & I can make just one post dedicated to Max's Celebration of Life. It was so perfectly Max. We don't feel there is anything we would've changed had we the opportunity.
Something we didn't realize until they were actually being read, was how perfect the books we chose were. See what you think. Here are the stories for those of you not familiar with these childrens' books.
Where the Wild Things Are
by Maurice Sendak

The night Max wore his wolf suit and made mischief of one kind and another

his mother called him "WILD THING!" and Max said "I'LL EAT YOU UP!" so he was sent to bed with eating anything.

That very night in Max's room a forest grew and grew and grew until his ceiling hung with vines and walls became the world all around and an ocean tumbled by with a private boat for Max and he sailed off through night and day


and in and out of weeks and almost over a year to where the wild things are. And when he came to the place where the wild things are they roared their terrible roars and gnashed their terrible teeth and rolled there terrible eyes and showed their terrible claws till Max said "BE STILL!" and tamed them with the magic trick of staring into all their yellow eyes without blinking once and they were frightened and called him the most wild thing of all and made him king of all wild things.
"And now, " cried Max, "let the wild rumpus start!"
"Now stop!" Max said and sent the wild things off to bed without their supper. And Max the king of all wild things was lonely and wanted to be where someone loved him best of all. Then all around from far away across the world he smelled good things to eat so he gave up being king of where the wild things are. But the wild things cried, "Oh please don't go - we'll eat you up we love you so!" And Max said, "No!" The wild things roared their terrible roars and gnashed their terrible teeth and rolled there terrible eyes and showed their terrible claws but Max stepped into his private boat and waved good-bye and sailed back over a year and in and out of weeks and through a day and into the night of his very own room where he found his supper waiting for him

and it was still hot.



MAX by Bob Graham, is a much longer story. Hannah read it - perfectly by the way! Its the story of a boy born to superhero parents who can't seem to fly, until one day he's faced with a problem that requires him to fly to avoid certain disaster. The question at the end of the story is "Now that Max can fly will be become a superhero like his parents?" His mother says, "Not important. Let's call him a small hero, a small hero doing quiet deeds. The world needs more of these."

I think our Max was indeed a small hero. Look what he's done for you and me.

9/05/2008

Tra La La

Silly home video made before cancer!

Parking for the Celebration

For those of you not acquainted with the beautiful village of Del Mar, parking is limited and parking fines are strictly enforced.

Your options (best first):
  1. Del Mar Plaza - corner of Camino Del Mar and 15th Street. Ample parking underground. Entrance is 50 yards north of 15th Street on Camino Del Mar.
  2. Beach pay lot on Ocean Avenue. $4/hr - CASH ONLY
  3. Metered parking is available on many of the streets. You will need Quarters ONLY to park at them.
  4. Lifeguard Station parking lot next to the Poseidon Restaurant on Ocean Ave. Metered parking only. Quarters. ONLY.
  5. Timed spots on the street are usually 90-min only.

There is a drop off area at the base of 15th Street where it meets Ocean Avenue (Sea Grove Park) for people who cannot walk far. You can drop off there and then park.

Please give yourself ample time to park and walk to the Celebration. We will start promptly at 9:00am. See you there!

9/04/2008

3 C's

I think many of the readers of this blog know Max exclusively through what is posted here. And many readers joined us recently, when much of Max's life consisted of too many sad/unhappy times and not enough good ones. Below, are three videos which - to me - epitomize strong characteristics of Max at various points in the last seven years. He really was a normal kid, put into an abnormal circumstance that unfortunately changed him to some extent, though his core remained unchanged. He was a cool, caring and crazy kid.

Cool
In this video, Max merges the who-gives-a-d*mn-what-I-sound-like style of Henry Rollins with the who-gives-a-d*mn-what-I-look-like geeky cool of Beck into his own rendition of 'Ring of Fire' (his signature song).

Caring
Max had to try three times to make this happen. He was so innocent and gentle which I think is what made him so attractive to the girls in his classes.

Crazy
One of the characteristics that I missed most in the last few years. Max was born very physically aggressive and unafraid. When he was just walking, I would crawl after him, chasing him into a corner - he'd come charging at me in an attempt to break through. He had many scars on his face and head from these early years of acion. Here, at two years old, finding out more about gravity and how fun it was.

9/02/2008

Guestbook for the Celebration

As a special keepsake of this day for our family we are going to - with your help and creativity - create a scrapbook instead of a guestbook.You can create your page ahead of time and bring it to the celebration, or we will have everything you need to create a page at the ceremony. You can bring a photo, poem, message, drawing, Max story, artwork, etc... but everything must be flat, not dimensional. We will have some of your favorite photos of Max there, if you want to use/incorporate one onto your page. Remember to write your name on the page!

Encourage your kids and the kid-in-you to create something Max would love.

Important technical info: Our finished scrapbook will be a 12 x 12 format. Your page should be 5-1/2 x 8-1/2 inches horizontal or vertical (which is an 8 1/2 x 11 cut in half ) - or smaller if you prefer. All the pages will be affixed to 12x12 pages later.

We know this will be something we will treasure forever.

Max's Celebration of Life


Max at Del Mar, October 2005

We will be hosting a Celebration of Max's Life from 9-10am on Saturday, September 6 at Seagrove Park in Del Mar (Google map). This will be a child-focused, child-friendly celebration. Seagrove Park is where we spend many weekend mornings together as a family - the rocks there are and were a special play site for Hannah and Max, and the park also afforded a good view of the trains passing on the tracks only feet away on the lower bluff.

Anyone and everyone is welcome - dress is casual (shorts and flip-flops welcome) befitting a weekend morning near the coast. If you feel the urge, wear one or any of the following visual themes that personify Max: the color orange, flames (ie, hot rods), camoflauge (ie, WWII), skate, or Star Wars, fish, dinosaurs or sharks (a favorite).

Come a little bit early for warm bagels and we'll get started at 9am sharp. There will be take-home build-a-Lego table stations for the kids to keep themselves occupied with during the Celebration.

Above, flashback to July 2006. Cancer-free (not really, as we found out later) and care-free. I just want people to remember that Max was a normal, kooky boy too.

p.s. Instructions for interacting with parents with recently deceased young children: should you see or overhear us laughing, here's why (thanks for the wonderful story Margo).
p.p.s. Says-it-all quote of the day: "Dear Max. I loved it when you were living. I will miss you." written by future US Open/Wimbledon champion and classmate Luke. THANK YOU LUKE!

8/31/2008

Max passed away at 8:45pm Sunday, August 31, 2008

This will be an evolving post:

Update - 9/1 6:55pm
For anyone wanting to contact us for any reason, Melissa's sister, Randee, is going to serve as our go-between. Her contact info is:
Randee
randee@cox.net
619-890-1743

We would like to make a request at this time that instead of flowers or gifts in memory of Max, please make a donation to the MagicWater Project. More than ever this is where our our efforts will be... to help prevent other families from having to suffer the loss of a beloved child like our Max. Thank you.

Update - 9/1 2:00pm
Andy & I are planning Max's Celebration service. Tentatively, we are shooting for Saturday late morning, September 6, 2008 in Del Mar at Sea Grove Park.

Update - 9/1 5:55am.
Missing Max terribly already. Two moments of magic Sunday morning captured on video. This was the real Max.

8/30/2008

Pics only - week of 8/24

Just some pics from this week to show a little more of Max's day-to-day experience fighting neuroblastoma.


Max playing one of his two favorite games, despite having a Wii and PS2: Snowy Bear.


Getting set-up CT scans on Tuesday at UCSD/Moores Cancer Center in preparation to start palliative radiation to Max's liver the following day. Max really loves the staff there and it shows that they return the sentiment. He is so comfortable and the experience very soothing and mellow (and usually quite quick!).


After CT scan, ice cream at Cold Stone! Max's favorite these days is chocolate with gummy bears mixed in. Unfortunately, today at this location they were out of gummy bears. Max didn't finish his ice cream, unsurprisingly...

Max sleeping at clinic on Friday while receiving red blood. Afterwards, he has a radiation appointment.


Friday's radiation appointment. Knowing how our middle-aged bellies become surprisingly flat when lying on our backs, you can see how distended Max's abdomen has become from the liver growth caused by cancer. As of Friday, Max has had 3 days of radiation and we hope that by Sunday he will start to get some relief and the liver will respond to the radiation and shrink as quickly as it grew.


Another shot of Max getting set up for radiation on Friday. This shot better illustrates Max's belly distension.


Waiting outside in the control room area while the radiation is administered.

8/29/2008

Pancakes for Dinner - pics from Monday







Andy: Max came home from clinic on Monday mad for pancakes (and happy about it!). Melis and he proceeded to make a batch. As you can see from these pictures, especially the last one, Max is a very, very sick child.

Actually, he is, that's not sarcasm though these pics belie the truth. We just got the latest VMA results in:
VMA
8/21: 841
8/25: 1379

Normal range at our hospital is around 9-10. So Max's is over a 100 times higher. Most of this is probably due to the metastasis in his liver but there's really no avoiding that the cancer is spreading like wildfire and we have no real options left. Max's ANC is dropping so we can't really do even light chemo if we wanted and I have a feeling the neuroblastoma is eating the chemo we're giving him for appetizers. Radiation may help and Max had his 2nd dose today. He'll continue through next week (taking Sat/Sun/Mon off as cancer takes weekends and holidays off, in case you didn't know that...) but hopefully the three doses before the weekend have a positive effect, shrink his liver back to a manageable size, and give us a little more time.

Melis: I'm reading a book off and on and found a quote today that struck me: Time is all you have. And you may find one day that you have less than you think. I think that we've done a pretty good job of living life to the Max. But just as the hourglass seems to run faster when the sand gets low, I feel like the time we have left is suddenly slipping away.

We had the talk with Hannah & Max on Tuesday. It was short. I wasn't sure by their reaction - or lack thereof - if we had said the right things. I'm still not sure Max was totally tuned in. All the medications he's on... there's no telling. I'm sure he was listening, but I'm not sure he fully understood. Or maybe he just didn't want to understand. Either way, we at least made it over the first hurdle and opened the door to a ever constant discussion. Hannah and I had another heart to heart Wednesday night. We discussed the difference between being apart and being absent. Max will never be absent from our lives. Hannah is such a girl and so emotional - and yet so aware of her own needs. When we finished talking I made sure she was okay for the night and told her we can talk about this any 'ol time, she said Okay; just as long as it ends with something different. So we ended by talking about a magic drinking fountain.

8/26/2008

Inflection point

I was trying to be creative in titling and writing this post like so many other parents have been when it has been time to convey the information that I will in this post, but creativity escapes me now.

Max is dying. He has been dying for some time, of course. Since 2004, he has been battling a cancer that had a terrible cure rate to start with, then he relapsed in 2006, then progressed this summer. Now, the neuroblastoma seems to be spreading rapidly to soft-tissue areas of his abdomen (liver, kidneys), despite continual treatment.

So, we are making plans for when Max leaves us and becomes pain free forever. Melissa and I knew that this time might come, but harbored hope that it never would, that we would be "the lucky ones." We still have a smidgen of hope, perhaps that's our downfall and will cause us much pain in the near future as we find it hard to let go of him, but without hope, what is there?

Let me give a quick update and then that will be it for this post.

- Pain: Max is on a morphine PCA pump. Last Thursday we had a horrific night - Max in so much abdominal pain that he was going practically crazy. Due to some transition issues with our hospice provider, we were caught off-guard and Max had to spend several hours writhing and screaming in pain, without anything we could do but try to comfort him with words (note: it doesn't work - try it - cut off your finger and see if kind words help soothe the pain). I fear we've done more damage to Max's psyche with that episode than shows. Remembering this night makes me so mad... sad...

- CT: we are having a CT done today to determine the spread of Max's disease. Last Thursday we had an emergency CT to determine what was causing Max's adbominal pain. It was there that we saw the disease in his liver and kidneys. Curiously, the pathology report from Max's brochoscopy procedure two weeks ago showed no disease..

- Radiation: we are starting palliative radiation to Max's liver today. We hope this relieves some of the pressure on his abdominal area so that he is more comfortable. Right now, he only wants to wear pajama pants.

I want to close with a picture of Max. So many pictures have been posted lately showing unhappy Max. There are moments of lucidity and happiness on his face, though they are fleeting. Those moments are treasures and Melissa and I are doing our best to make sure that as we capture them for the future, we also enjoy them in realtime.

Sunday afternoon, Max woke up from a late-morning nap. He wanted a popsicle and so went outside for some Naboo/popsicle time. It was only five minutes but it was magical.


Max's face is fairly puffy from the dexamethasone and morphine, and is truly the sweetest boy ever.

8/22/2008

If I Had a Wish...

Quote of the week by Big Sis Hannah

If I had a wish, I would wish that Max's cancer would go away and stay away
forever.

8/18/2008

Magic Water Fundraisers

In addition to the MagicWater 5 Mile Walk on Sunday, Septmber 7, 2008 here in San Diego, there will be a fundraising event Wednesday, September 24, 2008 at the Casa Blanca Salon & Spa in Fairbanks Ranch from 3:00-6:30pm.

8/17/2008

Back to the grind

Quick update on various things tonight...

Tomorrow I go back to work. It has been a peculiar two weeks - mostly because of the Max factor. We started chemo last week, as Melissa last posted. We are set to start week 2 of cycle 1 (3 week cycle). I've posted Max's new treatment roadmap under the 'Treatment Details' section header on the right rail of the blog. We are holding on the rapamycin noted on the roadmap as it turns out Max has pneumonia (we just started antibiotics tonight). Normally, this would be a huge scare for us but we are honestly quite numb about things right now. We know that this current drug combo is likely our last shot at stopping Max's neuroblastoma.

Max's catecholamines continue to trend in the wrong direction. Check out 'Latest Lab Results' for specifics. Just this last week we were dealing with (a) chemo, (b) nausea, (c) suspected lung infection that turned out to be pneumonia, (d) constipation with the threatand of irinotecan-induced diarrhea looming, (e) leg, neck and head pain.

Two of my employees at RealAge (thanks Ron and Steph!) have put together a fundraising walk for MagicWater to take place September 7. Please check it out if you have a chance, and if you are in the San Diego area and would like to participate, please email Steph Sybert for more information.

The walk is taking place in September b/c September is Childhood Cancer Month (not to be confused with a month to celebrate childhood cancer). There will be lots of fundraisers happening during this month. Many of these fundraisers do great things for kids with cancer (like the MagicWater one). Some less-so. Pat Lacey has an excellent, emotional post on this subject.

Finally, some pics from two weeks ago when Max 'n' me visitied the USS Midway for the umpteenth time (not a terrible way to spend the day, let me be clear). As anyone who has been around Max lately knows, military aircraft and warships are his latest passion. I am trying to make some special things happen for Max at the upcoming Miramar air show Oct. 3, 4, 5. Here is Max in front of some of his fav planes on the Midway.


F8 Crusader with 'Shark Mouth' paint job



Avenger torpedo bomber - this thing is huge!



Another huge plane - F14 Tomcat ("damnit Maverick!")

8/14/2008

Back from the Magic Kingdom

Our trip to Disneyland was okay. Max was so tired all the time and a bit sour thanks to the decadron (steriod) that we decided to take him off it slowly while we were there. This only made his pain increase which was worse for his mood. He spent all of his time outside the room in a jogging stroller because his legs hurt so much - and he was tired.

He did have some wonderful moments during his brief times in the park. His favorite rides are Star Tours and Soaring Over California, which we frequented and used the "Max Pass" - a pass similar to a fast-pass but you can use it on any ride at anytime. He also enjoyed a few rides early one morning in Fantasyland and of course the Autopia.


Max mostly wanted to sleep.

He was happy to be home Friday afternoon and couldn't wait to see Naboo, whom he thought must have missed us terribly. The cat was indeed very happy to see the kids.

Saturday morning he had an apopintment to go the oncology ward for platelets: he was critically low: 4 -- ouch. Monday found him in clinic to start a new chemo cycle. The same that Andy mentioned in the last post: temador and irinotecan. He also needed another platelet transfusion as he was at 3! (Just two days after getting platelets. sigh...) So Monday started a new treatment cycle that will find Max in the clinic every weekday for two weeks getting IV chemo in addition to the platelets and red blood he's going to need even more now that we've had to start him on some kind of toxic treatment.

We also took an xray of his lungs and left knee. He's been coughing and complaining constantly about the knee. The xray results had him in for an immediate CTscan: His lungs appeared to have extensive disease throughout. However, they couldn't rule out an infection, pneumonia, or bleeding and so a bronchoscopy was scheduled for Wednesday morning. A bronchoscopy is a simple outpatient procedure where the doc runs a camera down Max's windpipe to the lungs, looks around, squirts a little saline in there and sucks it back out to grow cultures. Because Max's platelets are questionable he had to spend the night Tuesday to get a fresh load of platelets prior to the morning procedure - just in case.

Andy brought Hannah & Nicky down in the morning before Max went in for the bronchoscopy. He was so happy to see them, he smiled and chatted. It was a nice scene. The bronchoscopy took all of 10 mintues and the doc reported back that she saw no evidence of disease inside. His upper right lung appeared to be squished by something on the outside - probably the nodules that have grown - and she said this could cause him to cough because he'd be unable to clear that part of his lung of gunk when he needed to. It looked irritated and bled a little when she flushed it. (We'll have an official report soon and will post any other findings as they become available.)

So not as scary as we had originally thought; but obviously far from being out of the woods.

8/04/2008

Off to Disneyland!

We haven't talked about it much here, but we're leaving this morning on the first leg of our family vacation (the second leg is chemo next week - fun!). Again this year, we're treating the kids to a loooooooong stay at Disneyland - 5 days. They are all so excited, especially Hannah who is our rollercoaster kid. Max is excited about Star Tours and the pool at the Grand Californian, which is where we are staying.

We have prepared our schedule in anticipation of the lower energy levels and mobility that Max has, and have brought along a jogging stroller for him (instead of a wheelchair which kills the back of those pushing it).

Next week, the 11th, we will start on a new chemo regimen. As already noted in Melissa's last post, things are not going well with his neuroblastoma. Frankly, we know we have limited options and time to turn this thing around and move it in a positive direction. Right now, Max is taking oral temozolomide and is tolerating it well at a reduced dose of 60mg/day. He will take this through Wednesday and then we will start the new chemo next week. We're debating adding Irinotecan to the Temozolomide as he had upon initial progression (which upon retrospect and if you look at the data a certain way, appeared to be working), or trying a "frontline" drug combo like carboplatin and etoposide. The carboplatin will hit Max's marrow hard and so its a difficult choice we have to make.

So while traipsing the merry landscape of Disneyland and California Adventure today, at some point Melissa or I will be emailing our docs to communicate the decision on which chemo regimen we want to start next week.

Thanks for all your kind comments and emails. We're logging off for a week or so to have fun with Max!

8/02/2008

Platelets and more platelets

Thursday's home blood draw was delivered to clinic the same day and they called me later to let me know that Max's platelets had already dropped to 24. He just had reds and platelets transfused Monday so I was a little surprised. He's been going seven days between platelet transfusions for a few weeks now and I had planned on bringing him in on Sunday for his weekly refill.

Well... Max had to go to clinic Friday for the refill. I wasn't sure what to do in preparation for our DLand trip, but the nurse (Beth, who is always very helpful) told me to plan on bringing him back Sunday anyway for a top-off on those platelets. As she put it, giving him more platelets on Sunday may actually put his count above 100. How bad would that be?

Obviously, Max has a platelet producing problem that is not getting any better since we stopped giving him toxic (chemo) treatments. We had hoped that by stopping toxic treatments for a while his marrow would start producing, but we are not seeing the hoped for effects of that.

Instead we are seeing rising VMA/HVA. If you haven't looked at the chart Andy has linked up, Max's 7/28 VMA=425 and the HVA=105.8. This was the second one in a row to go up up up and in all likelihood this means disease progression. Insert expletive of your choice here: ______!

We had a conference call with Docs Roberts and Sholler Friday and tossed around a few ideas with them. Funny thing is we, Andy & I, need to make the decision on what to do, what to give. I feel like we're holding the double edged sword. Max's marrow is weak. It's not producing platelets and even his red production is questionable. So while we wait to see if he can recover the damn cancer is having a field day in there. Then when we decide we have to introduce some toxic treatments in order to fend off the cancer, we're knocking his bone marrow for a loop, too.

During the conference call I asked the docs exactly what it means to be platelet dependent (this question has been on my mind for a while now). Max is pretty much there already. Platelet dependent (in my words) is when your marrow can no longer produce its own platelets. Transfusions are needed every 3-4 days to help ensure uncontrollable bleeding doesn't occur. There are instances when the body can finally make a comeback from this on its own. Many times a stem cell or bone marrow transplant is necessary.

Maybe this sword has more than two edges... Whatever the case, we are not ready to throw in the towel.

Home Visit was Great!

What a panic: I had to rush the kids home from camp Thursday to get Max's blood draw. Ha ha. The hospice nurse visit was very nice.

Deb was here to take pics (photos). Max was a little nervous about being poked at home and cried during his whole blood draw. The most he does at clinic is have a short ouchie-moment when he's being poked. Could be that I don't have a TV hooked up in his bedroom to distract him. Nonetheless, Max did great and he and I talked about having the nurse come back every week to do the same thing. He told me he preferred to get poked at clinic. Then we talked about how much time that takes compared to a home visit and he changed his mind. Yay!

One cool moment was the mic-key button change. In the past he has panic attacks during the button change. I'm not sure if he thinks his insides are going to come out when his button is removed or what. But the nurse we had at home did the switch so quick he didn't even have time to react (Deb took a great photo of this). And the nurse let him hold the old one (it wasn't too gross) and inflate the balloon. He was very happy about this. So was I.

The nurse we had this week, Heather, is not gong to be Max's regular nurse (although she's welcome back anytime - she was so good with Max). Liz was unable to make the first home visit due to some special training, but we are looking forward to having her on board. Liz was actually one of Max's (many) nurses during front line treatment when he stayed inpatient every month for his chemo.

I'm hoping Thursday was a good indication of how much more quality time we'll have as a family.

7/31/2008

Hospice - Don't Panic

I'm sure those of you who frequent Mashed Potatoes are wondering what the story is with hospice visiting Max. Well don't panic. The staff at the oncolgy clinic thought Max benefit emotionally from a break to all his trips to clinic. Currently he's going to clinic twice per week for blood labs, transfusions, doctor checks. His counts are always questionable so he also needs to wait around to see if a transfusion is neccessary. This alone can equate to 3-4 hours. Add to that a transfusion and he's there all day.

It's been 3-1/2+ years that Max has been going there and he's simply sick of it. We used to play games, read books, draw, watch movies, go to the school room or playroom. No more. He just sits on the bed and watches super mindless TV.

The goal is for the hospice nurse to draw Max's labs here at home and delivery them to clinic. If Max needs anything, clinic will call me and let me know when to bring him down. Could it really be that simple? I hope so! I think we're all looking forward to more time at home.

Food is not a Surprise

Sunday night we had "Happy Sunday to Us!" party. (Do you really need an excuse to have a party?) Andy had been to the market, picked up crab for Max, shrimp for Hannah, and big chunk of 4-layer chocolate cake to share. When dinner was over we broke out the cake and told the kids, "We have a surprise for you! Come to the kitchen!" The three kids closed their eyes... the suspense was killing them! We lit a candle on top... "okay, open your eyes!"

"Yay! Cake!" yell Hannah & Nicky.

Max looked at us like we were dumb as rocks. "Food is not a surprise for me."

Andy & I exchange looks that say, "We are dumb as rocks." Then we open the emergency new toy cupboard and produce a new surprise. We were rewarded with a smile. Whew!

7/27/2008

Your Comments

I can't tell you how much it means to me to get an email alert that we've received another comment on the blog. Just so you know we do in fact read everyone - because we receive them in our email as they're posted. Even the littlest "Hi" gives me a feeling that you're all out there, keeping up with Max, and that there is love and caring all over the place for our boy, even when we don't talk to ya'all all the time. Really, it's wonderful, heart-warming, and somehow strengthening.

Thank you.

Now if I could just find a few minutes to write a good post!