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!")


Anonymous said...

So cool to hear that there will be a fundraising walk in SD. I wish I could be there to participate!
Love and Prayers,

Randee said...

Hi, I signed up for the walk and will invite others on my email list. FYI the date is Sunday September 7. Your trip to the Midway looks like a fun day full of old time fighter jets!!!! We are praying harder than ever--never giving up.

Anne White said...

We are pulling for you! We are hoping this next week of chemo will do the trick. We have been following your site for some time, we found it through Andrew W.'s site. We hope you had some fun and memorable times on your family vacation. You deserved a great time together. I am so sorry Max was uncomforatble for a lot of it. Max definitely won in the "great parents" lottery. He is so lucky to have you for parents. Your family's drive, fortitude and determination have inspired us to be braver and bolder as we face our own battle with relapsed pediatic cancer. We thank you and wish you all the strength and courage you need as you march ahead. The hearts of many are with you.

Anonymous said...

Im hoping upon hoping for the new plan to do its job and kick the crap out of Max's pain. I am trying to think of an appropriate top gun quote to go with the pictures. I know them all I think... ill have to think about it. Thinking of you.
Carrie palmer

Anonymous said...

I am really sad to read those words "last shot as stopping Max's NB". I truly hope that it can be stopped some day, some how. You guys really are an amazing family and I am so glad I was lucky enough to meet you. As always if there is anything you need I am always available.

Anonymous said...

Thoughts and prayers for your family and your sweet, beautiful son, Max. He and the whole family have been through so much...I am so very humbled to read your journal.

Much love.

Anonymous said...

Love the pix of Max with "his" planes. Hugs to him now, and always!
Never giving up!!!! xo Ms. Weitz

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