Weekly (ha ha) Update

Thursday, July 3rd: Where are we… let’s see. It’s been a tough two weeks (emotionally) and I expect that to continue. But let’s start with today: even though Max and I are spending the day in clinic his attitude and mood are great.

Max, Nicky and I dropped Hannah off at Surf Camp 8:30am and headed up to Starbucks for hot cocoa and bagels.

Hannah's surf camp team photo (she's kneeling on the right of the instructor/red hat) - she did great and definitely got the 'stoke' by standing up her first day and continuing to improve throughout the week.

We picked up an extra dozen for his buddies at Radiation which was the next stop… a follow-up visit with Dr. Murphy, Max’s radiation-oncologist. Max loves his radiation techs and wanted to give them a present so we settled on bagels. They were very thankful! Nothing new at radiation – just a follow-up meeting with the doc.

Next stop was clinic. Max was due for Vinblastine, cbc’s and pee-in-a-cup. Platelets were low so we’re hanging out for a transfusion, too. We arrived at 10:30, Nana picked up Nicky for the day, and we’re still here at 3:30 and the platelets haven’t arrived yet. Yes. It can really be a long day. At this rate Max won’t be done here until after 5:00.

Max has been battling diarrhea the past two weeks, possibly from rapamyacin. We dropped it a few days ago and waiting patiently to see if it was the cause. He was having severe abdominal pain with it – not fun to witness when you can’t do anything to help. Yesterday that let up, but the diarrhea continues. He hasn’t had any ‘nutrition’ in several days and is living off of pedialite.

His body aches and pains seem to be more under control currently thanks to methadone and lortab with an occasional dose of decadron. His walking is labored – but he is walking. We haven’t used the wheelchair since the last week of school.

As for treatment, Andy usually does the write-up on that, but I’ll give it a shot. We’re giving Max a one week break from toxic treatments. Hopefully his marrow will start producing again. It’s scary to know that your child is dependent on blood products. A place Andy & I never wanted to be. Next Thursday we may try a new combo or cocktail as we like to call it: Cyclophosphamide & Etoposide, w/ a twist of Vinblastine. We’ll be replacing rapamyacin with cyclophosphmide possibly. We’re still trying to determine if the rapa is the cause of Max’s diarrhea.

Friday, July 04, 2008: we just returned home from a great BBQ at our neighbors home who also have a great view of the fireworks at the fairgrounds from their backyard. The Thurstons help us all the time with Hannah when Max needs to make hospital appts. They are wonderful neighbors and friends. We’re lucky to have them!

Hannah at the Thurston's pool, overlooking the Del Mar racetrack/fairgrounds where the fireworks show happens.

Nicky enjoying the party and what appears to be a scotch and soda... remember, he's a third child and the brother of a cancer fighter... as such, he's generally left to himself and has advanced accordingly during all the unsupervised time he has.

The kids also participated in the Del Mar Powerhouse Park 4th o’ July decorated bike parade this morning and we spent a few hours at the beach. All in all, a wonderful summer day!


Will's Dad said...

Hoping the D clears up and the next cocktail is the one that starts getting the job done again.

Anonymous said...

As ever, you're in my prayers and thoughts! Thanks for the treatment update. Glad you had a fun 4th...Lori is a special person! xolisa

Randee said...

Sounds like a great Fourth--hopefully we will see pics of the decorated bikes. I will call you in the am about tomorrow night--just need to know what time!! Just know we contine to pray for Max and the treatment to bring relief for him.

Anonymous said...

Good to see you had a good July 4. Glad to hear that Max`s pain is some what controlled.
We have a good family friend who runs an Italian restaurant near our house in Tokyo. She has been battling breast cancer for the past five years but seems like losing it. She says she stopped all the medication and is trying not to be scared and is having hard time trying not to let her husband panic either. I told her about a little boy in San Diego who is a brave warrior and living life to the max. I don`t know how much it gave her a perspective (that Max is only in his seventh year going through similar medical hoopla.) But it reminded me the weight of the burden that a cancer puts on patients and their family. You are all trully amazing in light of what is going on with Max. God bless and know that there is a prayer said every night, far away in Tokyo Japan. Love, Shiho
P.S. Sam saw his pictures at the zoo with Nick and keeps on saying he wants to go to the zoo with Nick next week......

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