HansJourney: Er

Sunday, July 15, 2012

Er

We had to take Hans into the ER yesterday for fever:( He had a really high HR and a really high white blood count. It could be that the lymph nodes are getting infected. He seems to be responding incredibly well to IV Antibiotics and blood and platelet infusions. His heart dropped from the 150's to the 90's. I am pleading our case for a birthday furlough if it is at all safe to do so! We hope that we will soon be on the road home to have as happy a birthday as possible!

3 comments:

Anonymous said...: Happy Birthday Hans!! You're a super hero to us!
Love you

G.Kathy & G.Dale & U.Quinn. XOXO; 10:09 AM
Charon said...: HAPPY BIRTHDAY HANS!!! Hope you are feeling better and get to eat all your favorite foods to celebrate this special day. You are one strong, brave boy!; 12:08 PM
Anonymous said...: HAPPY BIRTHDAY, HANS!!!! I am celebrating YOU from afar!

Will it be pizza, spaghetti tacos, or some form of grilled beast????!!! Cake, pie, and/or ice cream????!!! Enjoy the feast!

I love YOU!

Hugs and smooches,
Aunt Susy; 6:43 PM

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Hans' (Crazy) Treatment History

Hans was diagnosed at Age 3 yrs 3 months. At that time we were living in The Woodlands, TX. Hans began treatment at Texas Children's Hospital (TCH) in Houston

Dx = Stage IV High Risk NB MycN Amp 10/25/06

5 rounds of chemo, stem cell harvest, surgeries in 1/07 and 2/07 Autologous Stem Cell Transplant, Radiation Spring ’07

July 07 NED! 1 round oral Etoposide, Accutane through Fall 07/Winter 08

5/08 relapsed - bony lesion in rt. Arm

5/08 5 rounds of Topotecan/Cytoxan with Zometa, Radiation

9/08 two spots appeared, one on the dome of the liver and one on the left arm 3 Rounds Irinotecan/Temodor,

11/08 MIBG therapy w/ Vincristine and Irinotecan at Children's Hospital of Philadelphia (CHOP)

1/09 NED! 13 rounds of ABT751 at CHOP

12/09 relapse - one small bony lesion on skull MLN8237 at CHOP for 25 rounds of stable disease/good quality of life

6/11 Family move to Bakersfield CA

7/11 progression of disease in the skull, and bony lesion on the hip and possibly one vertebrae

8/11 radiation to skull 2 soft tissue and bony lesions, 3 rounds of Irinotecan/Temodor/Zometa soft tissue lesions responded, bony lesions persisted at Children's Hospital Los Angeles (CHLA)

10/11 progression of disease to two lymph nodes in neck ICE Ifosfomide, Carboplatin, Etoposide for one full dose, subsequent 66% dosing for 2 more rounds. Disease stable (CHLA)

11/11 Hans completed his second stem cell harvest at CHLA he used Mozobil and GCSF to stimulate cells

1/12 & 2/12. 2 rounds MIBG therapy at University of California at San Francisco (UCSF).

3/12 Stem Cell Rescue

3/12 Near Complete Response. Almost all disease evaporated with the exception of a teensy bit of that small, stubborn bony lesion on the skull

5/12 - One round of ch14.18 chimeric antibodies with GMCSF, IL-2 and Accutane. Hans hadn't even completed the first month of the therapy when pain led us to discover

6/12 - Multi-lesion relapse. 3 soft tissue areas on spine, one with a marble sized growth between spine and kidney, one soft tissue spot on skull, 2 bony lesions to 1 pelvis and 1 skull, lymph node involvement at right neck

6/12 Radiation to spine and skull; low dose IV Carboplatin and oral etoposide...

7/12 Progression to the Right Neck Lymph Node. Radiation to Lymph Nodes

8/1/2012 Widespread progression to multiple bony lesions, soft tissue disease in skull, cheek and behind the heart.

8/12 One round Vorinostat, XRT to cheek, spine and skull (6 session)
isolated spot XRT to Right Leg 8/22/12 and Left Knee 8/31/12. Progressed off of Vorinostat as indicated by PAIN in legs.

8/12 Continued emergent spot radiation to left leg

9/12 further progression. Emergent radiation to pelvis to alleviate swelling in left leg and feet. One round of Oxaliplatin.

9/21/12 Forever Nine. Hans completed his fight against Neuroblastoma. For nearly six years, he had given his fight 200% of his Mind, Body and Spirit. He is now running wild and free. His blonde afro is flying in the breeze.

Thank you for your bountiful kindness on this journey. Hans' journey was fraught with many difficulties, and yet charmed by many miracles.

About Me

Sunday, July 15, 2012

Er

3 comments: