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!

16 comments:

Anonymous said...

Wishing you a wonderful time! Enjoy! Although I know it's never as easy as that since you have difficult decisions to make... But despite that, I'm sure of all families you will do Dland to the Max! xolisa

Randee said...

Have a wonderful time at Disneyland!!!! We will be praying for you and the decision you will be making regarding the next step in Max's treatment. God's Blessings. Love and hugs to you!!

Anonymous said...

Have yourselves the best time ever!
Enjoy every minute and don't forget to take time out to rest and recoup your energy!
We'll be thinking about you and know whatever you decide on Max's treatment will be the right decision.
Love and fun days ahead... Nana

BreezieGirl said...

Have fun at Disneyland!

Anonymous said...

Have a great time at Disneyland! Luke really misses Max, but a family tragedy kept us away far longer than expected...we are home now and looking forward to seeing Max next week if he has the energy!
Love,
Holly, Steve, Jake and Luke!

Anonymous said...

I can't imagine how hard these decisions are for you guys. My thoughts are with you. I hope you all have a wonderful time in Disneyland - I know that Max, Hannah, and Nicky will for sure!
Amy

Anonymous said...

Roller coaster of love. I hope you all have a blast and Mel please try to keep Andy away from his high school musical friends. ;)
Courtney

Shannon said...

Hope you are having the BEST time at your favorite place on earth! See you when you get home. xo

Talita - Calebs mom said...

Wishing you a well desirved great time with the family at the wornderful world of Disney!! Awaiting to see the new treatment plan for our amn Max and praying for a wonderful comeback!!! Have lots of fun. Hugs from brasil
Talita Calebs mom

Anonymous said...

Hi there! Hope you're having a wonderful time at at Disneyland! We'll be there tomorrow (Friday) and will look for your crew. So happy you made the time to visit the happiest place on earth (I say this VERY tounge-in-cheek, but I do know the kids really believe it)!!! Kristin Belsky

Anonymous said...

Hope you had a wonderful trip!
Thinking about you all!! Hugs...Ms. Weitz

Leigh said...

Hi guys!

Have a wonderful trip to Disneyland. We are in SC visiting family---I hope the Kingdom of roller coasters and cotton candy will not be as hot as it is here!!!

With love-
Leigh, Noah & Zoe

Anonymous said...

Melissa and Andy,
We pray for you guys often. We follow the blog in hopes of a miracle each week. You guys are incredible. Keep it up! Sincerely, Meredith and "P.B. Ron"

Anonymous said...

Missy & Andy,
I love you both! You are the two strongest, most couragous people I know ( along with Max!). Please know I check Max's sites both every morning. I have never left a comment, I guess because I never know how to put it into words. Please let me know if there is anything we can do to help at all.
Stay strong! Give all 3 of the kids an extra hug and lots of love.
Yourselves too!
Love,
Jenee

Willie and Rosie Spahn said...

We continue to closely follow Max's progress. We know that even if we don't know moment by moment Max's needs. Our Lord does. We rely on Him as we lift up the entire family in prayer. We ask God to meet you where you're at. To comfort and guide you. We are asking for a miracle Lord,Please!! We are asking Him reveal Himself to you in a very real way. None of us understand why?? We can't imagine being in your shoes. Please find comfort in knowing you are cared for and prayed for daily. You are not alone. With much love,

Michelle said...

Max, you do not know me personally but I know a lot about you through my friend Randee. I beleive she is your Aunt. It has taken me sometime to write you, not sure why. Not too long ago I was in your shoes at a very young age for the type of cancer I had. I cannot believe how fast the time has gone by. Boy, I know the days where some are better then others, where you wish you can just be a kid. My prayers have been with you and your family for a few years now as Randee keeps us posted on you. I hope this finds you having a fantastic day and knowing that there is a light at the end of the tunnel. Feel free to write to me. I would love to show you and your family around ARTS facility at Liberty Station, where we work with many children who battle life challenges on a daily basis through art. Randee knows how to get in tuch with me via phone as well. My email address is michelle_ahand@yahoo.com or michelle.hand@cox.com. Sweet Dreams little one :)

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