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Austin’s Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about Austin.

www.cafepress.com/bandofparents

The Band of Parents

www.bandofparents.org

Band of Parents, PO Box 335, Dewittville, NY 14728




On October 3rd 2005 our spectacular son Austin was diagnosed with Stage 4 Neuroblastoma. In retrospect Austin had some subtle symptoms for quite a while but only really developed problems on September 6th when he started limping. He was promptly evaluated but everything was normal except for a few tests which suggested an inflammatory process which would only be sorted out with time. The limping resolved after a few days and Austin returned to playing soccer and scored 20 goals. We felt temporarily relieved. Almost two weeks later very small lymph nodes, smaller than BB's, appeared above his left clavical. He was promptly evaluated again but no significant changes were present and new studies were all normal. Again we were briefly relieved and celebrated by going out dancing.

That would not last. The nodes grew and knee pain returned October 1st. His physician parents had been examining him daily and now for the first time felt a mass in the belly. Evaluation at this time was more invasive and resulted in the worst day in our lives that would not end. The result of this extensive whirlwind evaluation: A large left adrenal tumor, neuroblastoma, pressing on his spleen and compressing his stomach. It extends to his spinal canal. All major lymph nodes are involved. The bone marrow is involved and he has bone metastases everywhere. He was significantly malnourished from having too small of a stomach to really eat anything significant and having the tumor consume any calories he did get. Through this entire evaluation Austin was absolutely awesome. Test after scarey test he followed directions perfectly. He flashed us his dimpled smiles all day to let us know he was O.K. He tolerated some very long and some painful procedures without flinching just by using distraction and hypnosis. The community response has been so incredible it is undescribable. Without this it would be totally unbearable. Austin could not be in a better hospital. Below is a summary of Austin's treatment since diagnosis:

October 3 - 10 Admit: Diagnosis, evaluation, surgical placement of double infusaport and chemo

October 13 - 23 Admit with fever and low white count. Sinusitis

October 27 - 30 Admit for chemo Cycle #2

Nov 9-10 Admitted for central line and stem cell harvest.

November 16 Scans show 3 percent reduction in tumor size. Bone marrow is 30% involved.

November 17 -21 Admit for chemo cycle #3

December 8 - 12 Admit for chemo cycle # 4 VAC

December 16-20 Admit for fever and low white cell count

January 3 - 8 Admit for Cycle #5. Scans show 50% reduction in tumor volume. MIBG scan is improved but not enough. Considered poor response "Stable disease" Treatment switched off the protocol.

January 24 -27 Cycle #6 outpatient - Topotecan & cytoxan

February 14 - 17 Cycle #7

March 1 - 11 Surgery in NY at Memorial Sloan Kettering Cancer Center (MSKCC). Two stage procedure about 11 hours. All tumor masses removed from abdomen and nodes in neck and arm. Broviac line placed in preparation for stem cell transplant next month

March 13 -16 Admit to Bronson Hospital cycle #8 Irinotecan, vincristine, cytoxan

March 19 - April 28 Admitted with fever, pneumonia and low white count. Large chylothorax and chylous ascites fluid build-up in chest and abdomen from extensive surgery. Chest tube places for three weeks. No oral intake allowed for three weeks. Cycle #9 with irinotecan, cytoxan, vincristine. Infectious diarrhea. Plays tennis and soccer the day after discharge with NG tube in and TPN running in the IV!

May 6 -10 NG removed and admit for cycle #10. MIBG show stable bone disease.

May 14 - 26 Admitted with Malassezia furfur fungal sepsis ifrom broviac line and sinus infection from NG tube. . Broviac removed.

May 30th - June 2 Fly to NY for testing at MSKCC. Qualifies for study

June 6 U of M for consultation with transplant team.

June 10 - July 3 Travel to NY MSKCC for monoclonal antibody treatment (3F8) plus experimental immune stimulator D-Beta Glucan. Follow-up scans show 80-90% reduction of disease.

July 15 - August 15: Travel to NY MSKCC for round 2 of 3F8. Bone marrow results from end of June found no cancer. Reharvest stem cells. Radiation therapy x 10 to tumor beck and neck. The cancer has responded so well to antibody treatment that transplant has been postponed indefinitely

August 20 - September 1: Return to NY for round #3 of 3F8 and Beta 1-3 D Glucan

October 22 - Surgery in NY to evaluate two lessions (Neck and back) both benign.

October 30 - November 3 - 3F8 #5 treatment in NY neutralized by antibodies.

December 1 - MIBG shows progression in the knee and skull

December - Tried on ICE at Bronson

December 26 - 29th, 2006. Scans show progressive disease.

1/10/2007 - High dose MIBG therapy in NY

3/2007- 7/2007 6 rounds of irinotecan/temodar + radiation to knee and skull.

7/27/2007 - Progressive disease on scans

8/18/2007 - Start radioactive antibody therapy + Avastin in NY.

8/30 - Avastin in NY

Latest Journal Update

7th Grade

Austin would have started 7th grade today.  Its getting hard to imagine him so much older.