Weekend update

I thought a comprehensive "where do we stand?" update was in order. After Melissa woke up at 5am this morning (as she does every morning) to give Max the first of many rounds of things via his g-tube that help to (a) give him nutrients, (b) make his body stronger, (c) treat the symptoms of other medications he takes, and (d) keep the neuroblastoma from spreading further throughout his body, and hopefully kill off some of the tumor cells too, that I would get an early start to the day. Now that I'm on cup #2 of coffee (drank from my Tiki mug painted by Max at CeramiCafe), here's the deal: I'm going to write subjective statements and then provide the evidence, as I see it, to support my statements. Hopefully this all makes sense to the reader.

Max's cancer appears to be stable.
He had an MIBG scan yesterday. We won't have the official report for a couple of days, but Melissa's unofficial reading during the scan shows no new spots. She thinks the area in Max's femurs appeared brighter (more enhanced), which would indicate presence/activity of cancer cells, but Max has also received radiation over the past 8 days to those areas, and so the enhancement should be due to tumor kill, the cells dying, instead of growing. We'll see.

Max's biomarkers are mixed.
For those that follow this stuff, here are some of Max's latest biomarkers:

5/2 blood draw
good-Serum copper: .75 ug/mL (range .75-1.45) - was 1.27 on 4/7.
good-Ceruloplasmin: 13.8 mg/dL (range 24-42) - was 31.1 on 4/23
bad-Il6: 155 (range <3.7) - Massive elevation in IL6 likely due to radiation.
bad-LDH: 1271

5/4 urine
bad-HVA: 85.9 - climbing from 49.6 on 4/28 but also heavily influenced by dietary intake.
better-VMA: 13.9 - was 30.1 on 4/28, so while still high, moving in the right direction.

5/5 blood draw
C-reactive protein: 8.7 (range 0.0 - 0.99 mg/dL). Influenced by IL6 so no surprise that this is elevated too.
good-LDH: 697

5/6 urine
still bad-HVA: 80.9
still better-VMA: 15.6

5/7 blood draw
good-LDH: 644

Tuesday, Max has his last dose of palliative radiation to his femurs, and we begin therapeutic radiation treatment to his S,1,2,3 vertabrae and skull, where we see continued activity - the skull being the most disturbing as the metastes appears to be growing inward as well, and we're hoping to stop it before it pushes into Max's brain and causes all sorts of problems.

Today, Max receives his second dose this week of velcade. According to the protocol developed for Max, he'll take the next week "off" of chemo. It remains to be seen if we'll give him rapamycin during this off week, which really isn't an off week at all, just one where he's not getting the cytotoxic combination of gemcitibine and velcade.

We have a busy morning. There's a hike this morning with Max's cub scout pack 734. We're meeting at Torrey Pines State Beach and walking south to Flat Rock, as part of national day of hiking for scouts. Afterwards, we head down to the embarcadero area of downtown San Diego to participate in the Celebration of Champions put on by RCHSD. Max loves this event and he's happy to be so active and busy, and not in the hospital. Most of our family and Lisa Sturt will be there to cheer Max on. Hannah is taking a leave of us this morning, traveling up to La Canada/Flintridge area to visit with my dad her cousins, who leave soon for Nashville to start a new chapter in their lives there.

We remain cautiously optimistic that the current treatment is providing some positive effect. Time and dilligence in executing his treatment plan will tell. For now, we're hoping to have a fun, family-focused weekend.

We have some exciting news that we can't share yet, but it involves Deb and her photography. Here's one more from the recent shoot. Priceless...


Anonymous said...

This morning as I'm readng Your post, Andy, I'm feeling good over the good parts and unhappy with the not so good parts, knowing in my heart it will get better. Then I scrolled down to Deb's picture... Precious! It has made my day. Thank you for sharing.

Love, Nana

Anonymous said...

What stunning photography...too bad I live in MA and cannot have Deb take pictures of my son too! Hoping for the best for you all...

Anonymous said...

I'll admit that a lot of what you wrote is Greek to me, but I'll take your "subjective" assessments at face value. I am holding my breath and praying that things are going well and that Max will triumph over this disease.

A very touching photo at the end - you can see the bond they have with each other! Have a wonderful weekend together!

-Cari (DeJong) Nelson

Anonymous said...

I vote for this picture to be the 'Hallmark' card of the year. Priceless!!

Anonymous said...

Just seeing their backs reminded me of my husband's mother and how her favorite photos were of Jim's back..even from their backs one can see the bond of siblings and how dear they are to each other. Priceless!Deb is terrific and her photos make me cry! I am such a wosp!! Wishing you a wonderful week end and a special day for Melissa with her sweet children.. xo Linny

Randee said...

What a wonderful time at the Walk of Champions--another one of those times when your heart breaks and fills to overflowing at the same moment. It was wonderful to see Max enjoying himself with his friends and to watch them all running together. Andy, I appreciate so much the time you take to keep us updated on Max's progress. The picture is beyond words--it is amazing the relationship your children have with one another. Enjoy a wonderful Mother's Day together. Love you and praying for all of you!!

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