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.

20 comments:

Randee said...

Such a blessing to see Max smiling and enjoying pancakes. We pray constantly for Max and for all of you as you walk through this difficult time. We love you and are here for anything and time.

Thelma said...

Such great pictures. When Max smiles like that we all light up. It's wonderful to see him happy as that must mean he is feeling good.
And that's what we want for him... more of the good times. If it takes pancakes to do that then so be it!

Love you all, Nana

San Diego Mom said...

Cherish the moment. I hope there will be a day in the future when you can recall this moment and laugh about it...." and remember Max wanted to have pancake for dinner!?!?"

I want to pray especially for Hannah tonight. And for my Nicky. I hope he will remember many fun moments he had with his big brother.

Listening to Aretha Franklin's Lord's Prayer as I think about you all.

XOXO
Shioh

Anonymous said...

He is so beautiful. My prayers are still for a miracle, as I know yours are too. If not a cure Lord, at least more time. More good time. Much more good time.

I love the pictures. He is making me want pancakes! I am so glad he felt well enough to make and eat them. I bet they were fabulous.

A Max fan from Kansas

Deqlan said...

What beautiful pictures of Max smiling, really priceless. Please know that you are all in our prayers, each and every day, and I pray Our Lord continues to hold you , guide you , comfort you, enfold you with His love. Hugs to a super hero Max and a super hero sister Hannah
God Bless
Samm mom to Deqlan

Anonymous said...

This made me smile and cry at the same time. Max is teaching people he doesn't even know life lessons with his spirit and courage. Thank you Max- what a special boy. Praying here in Northern California for you and your family.

-Leandra

Anonymous said...

You are such wise parents. Again and again I am struck by your empathy, sensitivity, wise words, and healthy common sense!

Max truly is a miraculous child (as is Hannah in a different way), and he has been blessed with the gift of awesome parents.

By the way, I loved your quote. Thanks so much for sharing it.

Sending Prayers, Hugs, & Love for Everyone, Susan
Jenkintown, Pennsylvania
United States

The Morris Family said...

What treasured memories! Cling to the Rock! There is no depths that we find ourselves in that He is not there. This is the only way we are making it without our little 3 yr twin, Joel, his fight against the beast NB was so short, (1/23/07) His mercies are so great, his wisdom so infinite, his plans....well we do not understand but they are righteous. You have fought the fight and been so faithful to Max! He is a hero!!
Cindy Morris
www.weloveyoujoel.blogspot.com

shoemake family said...

Know that none of your lives will ever be the same. Praying for all of you as you continue on this journey. Praying for a peace which passes all understanding that ONLY the Lord can give. Praying for Hannah as she deals with the information about her brother. Praying for glimpses of special memoriable moments with Max. Praying for strength and endurance for you as parents. Know you are covered in prayers from Dallas Tx. Thank you for sharing your life.

Anonymous said...

Loved the pics! Had to laugh at the Flintstones vitamins towering over the "drug counter." Hope the Feds don't get a glimpse of your personal pharmacy - you might be in for a raid. I love you guys though; I'd post bail for you! xolisa

Anonymous said...

Thank you for the wonderful pictures...seeing Max smile was a gift. Hannah is a very special sister...she is a gift in Max's life. Nothing wrong with having pancakes for dinner...yummy! Max knows what is good! Great seeing him actually eat! xo Linny

Anonymous said...

Thank you for sharing. As usual - I'm speechless. Much love to an extraordinary child and family. I'm always thinking about you all.

Lea White said...

Keeping you in my prayers and in my thoughts. You are so strong!

Lea White
http://whitsinnz.blogspot.com

Anonymous said...

Although it's hard to wrap ours heads around this truth. We pray that you find comfort in the truth that God who created Max and all of us. Loves him even more than all of us put together. Thank you doesn't seem enough to say for sharing your lives. It gives us the opportunity to learn, grow and pray for you and your family. You are doing a remarkable job with all three children. Our hearts ache, but...I like Hannah's wisdom. I'll close with....Our hearts rejoice with yours seeing the happiness of pancakes for dinner! Willie and Rosie
(team Patti)

Anonymous said...

Hugs to you sweet pancake boy!
Love, Ms. Weitz
p.s thanks for the pix, never tire of seeing Max!

Anonymous said...

Lots of prayers coming your way. You are amazing parents. I do not know where you get the strength to cope with what you must on a daily basis. I just feel so very sad about what is happening to Max-and your family. :(

Leigh William said...

Dear Andy, Melissa, Max, Hannah, and Nick,

There will never be another pancake that I eat, where I don't think of how beautiful your smile is Max. And we eat a LOT of pancakes in our house! :-)

With love,
Leigh

p.s. Melissa, would the book you are reading happen to be by Randy Pausch, The Last Lecture? I was on the plane home from North Carolina and when I read that line (it is in his book as well if it happens to be another book that you are reading) I really had to take a moment to reflect on just how uncertain the time we are given truly is. Each breath is a gift--one not to be wasted.

Ellen Hanson said...

Praying for Max and your family.
God Bless, Love, Ellen
http://www.caringbridge.org/ma/seanhanson

Anonymous said...

Thanks again for another cute picture! Much love to your family, Max, Hannah and Nick. I still think it's hardest on the parents, kids are resilient...but still so hard for everyone. Max will never be absent from all our hearts.

Blacks

Amy from San Diego said...

Mikulak Family,

Our hearts are broken with yours. We know that Delaney will welcome Max into heaven.

Max, like Delaney, will live on in our hearts forever.

The Wrights,
Bob, Amy, Kevin, Shelley and Angel Delaney www.caringbridge.org/ca/delaney

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