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.


Anonymous said...

So glad to see some words. Missed you guys. All the best for the rest of the week.

Max my Hero!!!


Anonymous said...

Thank you for the update. I check in all the time as I am thinking of you all so much! Hugs and prayers for you all!

Shannon B. said...

Thanks for the update & sorry we missed you on Tuesday. SO glad to hear the bronchoscopy was better news than originally thought. Hope to see you all soon. xo.

Anonymous said...


It was great to run into you at SBPC. Thanks for your good advice. I think of you all so much. Sending you all lots of good thoughts! Much love,
Laura B

Anonymous said...

I finally figured out how to leave a comment! You might get a few from me now!
Laura B

Randee said...

I, too am so glad to see your update. I stop by twice a day and when you don't post I enjoy reading what everyone else has to say. Glad the tests on Wednesday were better than expected. Love you guys!!!

San Diego Mom said...

Hi there. I'm glad Max was able to enjoy the Magic Kingdom, despite the fatigue and the pain. It must have been hard for you and Andy when you can't simply expect the child to be totally happy at Disneyland, which a lot of families probably take it for granted. Wishing you a good remainder of the summer. Shiho

Anonymous said...

I'm so relieved there is no evidence of disease in his lungs...but so sorry it is causing him to cough. I can't imagine what he must feel inside. I'm grateful he was able to enjoy some of his fave rides. Seeing him in the pic with his airplane...his knowledge and passion for war airplanes is amazing. I felt my heart completely melt to read how thrilled he was to see Hannah and Nicky...and the constant of you both,his mom and his dad...nothing means more. This is the stuff of life. I pray for time, for hope, for a miracle...and all the Love in this world, and then some.



Anonymous said...

Hey Max! It is great seeing your big smiles. They light up my heart.

I love you, Nana

Anonymous said...

Max, you have great taste. My all time favorite ride is Soaring Over California. Could you smell the oranges when you flew over the orange groves? I think I could ride that ride all day.

Praying for you!

L in Alaska

Talita said...

Hey Max,
I hope you got to have a bit of fun at disney.
I always check in to seep your mom/dad posts, and I realy love your pics, and your corage amazes me! Your the man!!
You know you are something special, you have ppl from all over praying for you, and I was releaved to see that the bronchoscopy went ok, and that the nasty cancer isn´t in your lungs!
Praying always, and hopeing for you to have a tone of energy to play with your siblings and naboo.
Love from Brasil,
Talita - Calebs mom

Vickie said...

Thanks for the great photos and the Max update. I adore your family and feel the highs and lows of your days at Disney.


Anonymous said...

I love seeing the pictures of the kids together and the smile on all their faces. Hannah and Max looked so happy on the ride together. That is truly what life is all about! Always in our thoughts and prayers and we Love You!

Anonymous said...

I'm not certain how I found Max's blog. Neuroblastoma took a little angel I knew this past year - Harrison Nichols.
Max...you keep believing and NEVER give up!You are an amazing young man and fighter.


Anonymous said...

Hugs to Max, and you all, as he starts another round of chemo. Glad that he had some times of fun at Disney. (Heartwarming how much Naboo is loved) See you at school soon! =) Ms. Weitz

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