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TEAM NICO

Our son, Nico, was diagnosed with HR pre-B ALL (acute lymphoblastic leukemia) on January 2, 2013. This is a record of Nico's progress.

WELLNESS WARRIORS

Birds Flying High . . . 

7/2/2013

5 Comments

 
Nico and I have a tradition. Whenever we get released (yes, like a prison sentence) from the hospital, we listen, sing and dance to a specific song. Eventually I will attach the audio file, but for now here are a few of the lyrics:

Birds flying high, you know how I feel
Sun in the sky, you know how I feel
Breeze drifting on by, you know how I feel
It’s a new dawn
It’s a new day
It’s a new life for me, and I’m feeling good!

I will give you another verse after we clear the next hurdle. Wow, Interim Maintenance was rough, but we ended strong. Every admission has a variety of bumps, but it is getting easier. It is not easier because the bumps are less sucky, but because I think we have perfected raising hell: we know what nurses are knowledgeable and skilled, we know where to lodge complaints, we are confidant in our own knowledge of Nico and his protocol, and we know 100% that his primary oncologist and nurse practitioner have our backs. So, we did this. We got through it!

Physically this series was hard on Nico’s body. After each dose of Methotrexate, our boy has developed blisters and sores from his throat to his bottom, and requires a lot of oxycodone just to drink water. But like Jeff said, these trials do not stop him in the least. He is still Nico, doing what Nico does. We have Delayed Intensification next. This is supposed to be the worst of the worst, but once we are through, we are out of front-line treatment! Nico’s world can resume some normalcy at that point (fingers crossed). We start DI July 19th and it should run approximately eight weeks. So we’re gearing up.

Thank you for all the love and support.

P.S. If you would like to see a 15 second clip of Nico doing his I’m-out-of-the-hospital dance, I posted one directly after this update.

5 Comments
Jianwei Sun
7/2/2013 12:14:36 pm

I am happy that Nico almost finish the IM. We are half way through DI, and also looking forward to LTM in four weeks.

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MB
7/5/2013 12:08:57 pm

He looks so happy during this dance!! Maybe when all this is done you guys should come to Chicago for a show...I see a performer in your living room! Love you!!

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Shannon
7/5/2013 01:21:21 pm

He is VERY dramatic, MB. Very. Since he was about 18 months old, he covers his eyes and shakes his head when he's upset! He probably would really love a show!

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Adriana
7/8/2013 02:04:57 pm

Wait, I thought this interim phase was the worst, there is ANOTHER one even much worse? :(
He looks well in the pics and his hair is growing fast! Heck, he might longer hair than Natalia in a month. haha ( not even kidding, since my 22 months old child has 2 inches of hair...and never had a haircut!).
I really like to get these updates btw! keep them coming.

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Shannon
7/12/2013 02:34:19 am

Yes, the next phase is called Delayed Intensification (DI) and it's supposed to be the worst because (1) it's most chemo at once and (2) they pound them with chemo even if the kids' blood counts are low. During the other phases, they let the kids recover before they hit them with chemo again, but in DI they just pound them unless the kid is seriously ill (with one potential break in the middle of the 8 week cycle). Sigh. The positive side is that hopefully it won't drag on and on like the phase seemed to do.

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