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Michael’s Story

Mikey Forever 4  6/14/04-8/19/08
Anna Forever 18   1/27/95-3/2/13

March 2013: After saying goodbye to our precious Mikey 4 1/2 years ago, we never dreamed we would be grieving another one of our children.  On March 2, our beautiful first born baby, Anna, was tragically killed in a car accident with a Centro bus. She is reunited with her baby brother and no doubt happy in glory with her Lord forever...

On October 26, 2007 our little Michael (who is 3 1/2) had an outpatient surgery to remove his tonsils. He did very well with the procedure but in the recovery room we noticed, for the first time, his eyes sort of crossing. We chalked it up to the anesthesia and didn't notice it again for several days. On follow up with the ENT he looked great, the doctor didn't see anything wrong with his eyes at that point. By the second week after the surgery we were noticing it more and more often and the ENT followed up again, saying perhaps he was developing a lazy eye - very common at the age of 3 - and we should schedule with a pediatric opthamologist. We scheduled that and headed off to Florida for a couple weeks of family fun in the sun! Michael got to meet Mickey Mouse and go to his house - major highlight in his life!!! :)

We returned home and first thing Monday morning I was at the pediatrician for a sick visit with Andrew - and of course had Michael along. Dr. Hellems briefly checked his eyes and knew we were scheduled later in the week for the eye doc - but she felt uncomfortable with what she saw and had us back the next day to really check him out and get to the eye doc immediately. The eye doctor agreed that it was not a lazy eye and that Michael needed an MRI right away. We headed over to the hospital for a long day of testing, and at about 11pm on Dec. 4th the doctors informed us that there was a lesion on Michael's brain stem.

On Dec. 6th he went back in for a CT Scan and the neurosurgeons we met with that day confirmed that he has a large tumor growing in his brain.

Update Jan 2008: After a craniotomy in Boston achieved biopsy only, Michael started Head Start III protocol. He received high dose chemo: cytoxin, etoposide, high dose methotrexate, cisplatin, vincristine and temodar. After 3 cycles it was determined that Head Start failed Michael, with 52% overall growth.

Update April 2008: Started radiation along with temodar and irinotecan. We discontinued the chemo after the first week or so to make sure he could achieve the max amount of radiation - 3600cgy craniospinal, boost to the spine of 3960 and boost to the primary tumor of 5400. MRI after two weeks showed overall growth due to tumor necroses.

June 2008: Completed 30 days of radiation successfully - though not without complications. Michael was managed with decadron throughout, and a couple PICU visits for airway trouble.

MRI scheduled for June 30th.

Update July 2008: MRI showed progressive disease just 4 weeks post radiation, with a new tumor and new nodules in the brain and significant progression in the spine. The primary brain stem tumor, however, appeared stable.

Alternative treatments started mid month - Budwig Cellect Protocol and many many supplements including some of baby Laura's breast milk.

MRI scheduled August 1