Samuel's Medical History

Samuel was born 4/21/2002 a very healthy and perfect almost nine pound baby.

He was diagnosed 4-20-04 with precursor B cell ALL with normal cytogenetics and CNS 1 by diagnostic LP.  He was high risk by WBC criteria (265,000) and was treated as per CCG 1961, arm C.  He had CNS and gut complications that have limited chemotherapy administration.  Because of his numerous, severe complications his parents have declined further chemotherapy.  Most of his treatment was given at Seattle Children’s Hospital. 

Treatment summary for ALL:

•Induction per 1961 completed

•5/4/04 admitted with MRSA pneumonia.  Developed pseudomonas sepsis, typhlitis with perforation, and colectomy.

•6/7/04 became obtunded and found to have non-obstructive hydrocephalus.  VP shunt with multiple complications.

•6/29/04 transferred to Seattle Children’s Hospital for further shunt management and care.  Received the remainder of his chemotherapy at SCH. 

•7/04/04 6MP and Methotrexate orally.

•11/04 began Consolidation from Arm-C 1961

•1/05 began IM, discontinued due to severe gut dysfunction and hospitalization. 

•3/4/05 completed IM

•4/05 began DI, skipping month 1, entering Consolidation month discontinued on day 2 due to gut dysfunction.   Started after a week off and finished.

•6/05 Augmented LTM without steroids and half dose of 6MP and Methotrexate

•8/1/05 through 12/05 treatment discontinued due to gut complications

•IT chemotherapy with BMA 12/05, 1/06 and 2/06 clear of leukemia cells

•MRD results indicated 1-2% abnormal cells

•2/06 treatment stopped

Peripheral events and treatments:

•5/4/04 Pneumonia followed by sepsis, acities, typhlitis, lung collapse, hypertension and MRSA.

•TPN induced hepatitis with anorexia

•5/28/04 Total colectomy due to typhlitis

•6/24/04 Hydrocephalus with unknown origin. Surgery included: two VP shunts, two ventriculostomies and two VA shunts and a Third Ventric.  Five later surgeries to the peritoneal cavity to remove excess CSF in quanities measured in liters.  2.5 liters, 1.5 liters, 1 liter, 800ccs, 600ccs respectively.

7/22-11/01/04   Patient in physical therapy to learn how move, hold things, sit, crawl, stand and walk.

Currently the pt has a Metronic Valve VA shunt, which is set at a pressure of 1.5. The 11/04 CT scan showed resolved hydrocephalus and normal ventricles

11/04 - Anal and rectal collapse was noted.

•2/7/05 Iloestomy revision due to closed stoma, surgery revealed strictures in small intestine and pancreatitis. G-tube placement and anus was opened. Skin on the anus was noted to be similar to that of a burn patient and considered obliterated.  Anus closing and rectum narrowing continues to date.

•8/12/05 Ileostomy take down with reconnection. Numerous adhesions/scar tissues noted.  It took 5 hours to do a 1.5 hour surgery.

•11/05 port-a-cath replacement

Sedated Anal dilation for strictures 4/06/ 6/06, 7/06, 9/06, 2/07 4/07/ 1/08, 3/08

Additional history:

Allergies: Asparaginase, Oxycodone, Methadone

Feeds continue at 90% through g-tube: diet monitored by Naturopath, Dan Labriola, ND (206) 784-9111

VA shunt and Oncology history between 7/04-12/05 contact Children’s Hospital, Seattle, WA (206) 987-2000. Samuel is also known/followed by Children’s pain team for pain management.

A palliative care conference completed 12/14/05 (see Decision Making Tool attached) resulted in discontinuing chemotherapy to allow Samuel’s GI issues to be addressed. Parents are clear in their wish to discontinue all chemotherapy for Samuel currently and in the event of relapse.

Anoplasty 12/4/06 by Dr. Levitt, Cincinnati Children's,  performed at OHSU in Portland, OR.

ALL relapse 6/21/07

Alternative protocol...

Cesium/DMSO protocol started 7/2/07

Second Remission achieved 8/21/07 following the above protocol.  NO chemo, radiation or BMT.

Relapse 9/21/2007 with severe cellulitis infection around the G-tube stoma

Third Remission 12/21/2007 using the Cesium protocol and additional low dose prednisone.

Relapse 3/21/2008 with significant GI failure

With Jesus 5/8/2008