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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

Latest Journal Update

Many Thanks

I don't think it will ever be possible to adequately thank the world for the tremendous love and support that has been showered on our family during the last week.
In time, I will try of course, but for now I would just like to say that it has meant so much to us to see the impact Anna had on so many. 
People waited in line for hours and hours to offer condolences. Whole schools remembered her, sports teams honored her.   Anna made an impression while she was alive and seems to have deeply and profoundly affected multitudes in her death.  I take so much comfort in seeing and hearing the good that has come and I'm completely uplifted when I think of all that is yet to be accomplished through our tragic loss.  May it be a gain for the world and a victory for Christ!

Her funeral mass brought Peace to my soul and many of you said the same thing.  I'm told there was a legion of Angels surrounding St. Margaret's on Wednesday morning offering spiritual protection and the alter full of Holy Men speaking the words of the mass, the same unchanging words spoken everywhere throughout the world, yesterday, today and tomorrow, was just beautiful to me.  Fr. Hyde spoke beautiful and memorable words that I hope and pray will stay with everyone for a long time to come. 

We said goodbye for a time. Instead of college and all the things of the world we were looking forward to, we will instead be a witness for our Lord Jesus. We will accept a different path for Anna's future than the one we had planned because no matter what evil may come to us here, The Way, The Truth and The Life remain constant.  Evil does not win.  Tragedy, disease and suffering do not define us.  

Yes, there are so many day-to-day things that will break my heart - probably for a long time to come.  I miss Anna and her presence in our house and our life. I can't believe she didn't walk in the door from school and dump her books and hang out in the kitchen eating weird combinations of food for 2 hours.  She was our go-to girl for all things fashion and photography. I don't think I've snapped a picture in 2 years. Why would I when hers were so much better? I was always excited to see what she would create next.
I look at her beautiful face and captivating smile and refuse to believe I will never see it again except in pictures.
Is it fair? Nope
Does is make sense? Never
There are a million ways her absence is being felt and we are grieving and it's just plain hard.

Still, ultimately there is Hope and that defines us. Our faith defines us. The love of Christ defines us. It is our reason and our purpose and our strength. We will grieve because we are human, but our eyes will stay focused on the goal.

My friend Leila published this poem on her blog yesterday and it spoke loud and clear to me

"I slipped His fingers, I escaped His feet,
 I ran and hid, for Him I feared to meet.
 One day I passed Him, fettered on a Tree,
 He turned His Head, and looked, and beckoned me. 
"Neither by speed, nor strength could He prevail.
 Each hand and foot was pinioned by a nail.
 He could not run or clasp me if He tried,
 But with His eye, He bade me reach His side. 
"For pity's sake, thought I, I'll set you free.
 'Nay -- hold this cross,' He said, 'and follow me.
 This yoke is easy, this burden light,
 Not hard or grievous if you wear it tight.' 
"So did I follow Him Who could not move,
 An uncaught captive in the hands of Love."
 -- Elizabeth Cheney 

God could have overcome the world with His strength and His might but he chose the cross instead.  And while it wouldn't truly be my first choice, what do I know?

The only thing we can possibly do as a family of faith, as followers of Christ, is Trust in Him.
I will utter the prayer I prayed when that phone call came just after 2am last Saturday morning, "Father into your hands I commend her spirit."

Father, into your hands I commend mine.  Perfect me.