Thursday Night, 11pm
Evan with hockey buddies, Zach (left) and Kevin (middle), B.E.D.  Kevin had just celebrated one year of being in remission from cancer.

Perspective for those of you that desire it, and a slap in the face for those of you who still don’t get it (doubt that is any of our followers):

From my friend Corinne, taken from her son Kevin’s Carepage (my story):

On May 26, 2006, after a few months of periodic headaches, Kevin (a competitive gymnast and ice hockey player) was diagnosed with a medulloblastoma (a cancerous brain tumor) at the age of 9.  He underwent surgery (May 29) and then traveled from his home in Southern California to St. Jude Children’s Research Hospital in Memphis for adjuvant therapy.  He received radiation therapy throughout the summer and then high dose chemotherapy (in the form of four bone marrow transplants) throughout the fall and winter, returning home in January 2007.

Despite being away from home for so long, Kevin kept up with his schoolwork and returned to 4th grade full time in April 2007.  Kevin travels back to Memphis every 6 months for scans and tests to confirm that the cancer was eliminated and, by the grace of God, the last scans (December 2008) confirm it has.
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Yesterday
Wednesday, July 1, 2009
Posted 1 day ago

Hello Everyone. I don’t know what to say. I can barely even type. (Maybe, if I don't type it, it won't be true?) Today Dr. Gajjar pulled me aside and said the preliminary MRI they did yesterday before the fMRI detected an area of concern in Kevin’s lower right temporal lobe. The prelim-MRI is not very accurate so they cannot say what it is, but it is likely a recurrence, and, if it is, surgery is recommended. We will know more tomorrow after his ‘big’ MRI (which is scheduled for 2pm). Kevin and Julia do not know yet. Your prayers for clear answers tomorrow, for Kevin, and for the rest of us are appreciated. We may know the results of the scan late tomorrow night, but we may not know the full answer until Monday due to the holiday weekend (most staff are off Friday). Regardless of the results Kevin, Julia, and I will be flying home Friday.
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Corinne and I have spoken and emailed several times in the last 24 hours.  There is nothing to say but support my friend in need. She has supported me from day one of our journey.  She has dreaded this day from the first diagnosis. It is the nightmare every family that lives with cancer has to fear, it’s reoccurrence.  Corinne and I have learned things we had not planned to in our lifetimes and one of those things is that reoccurrence of anything, especially cancer, is not a good thing. It tells us that this cancer is very aggressive and often other treatment options are only band-aids on the sinking ship.  But as I told Corinne today, no matter how dismal things seem, we have to remember that right now, there is a treatment plan which translates to HOPE, the only thing that we have to hold onto in the nightmare we are living.


While my next post was to highlight my boy Derek, another boy had to take precedence.  This could be your boy.  It was my boy.  We need to keep life in perspective and realize that we are all precariously walking on that tightrope with the lion’s lair below us, with the evil in this world threatening to toss us from the security of that rope.  Please keep Kevin and his family in your thoughts and prayers.

This week I allowed the devil to slide under the door, and had negative thoughts about people in my life that I felt distanced from and some comments on CB that made me feel like people weren’t listening.  I had to do like my friend Diane always says, and that is to let the Holy Spirit intervene, and though it is easy to forget, I continue to remind myself of the only HOPE I still hold onto, and that is my God and his promise to me.  I have sat on my negative thoughts, thankfully, and sat back in prayer and silence, and was rewarded by positive comments via email and CB.  Just like all women will agree with, if you step on that bathroom scale and you like what you see, your day is going to be a good one.  If those numbers stare back with the wrong combination, your day, your week, your month is screwed. That was the number one reason I stopped getting on the scale years and years ago, as I began to practice what I preached with my personal training clients.  Nothing is going to dictate my perception of myself that was until the reality of losing my son, which dictates each and every moment for me.  A few people reminded me how impactful Evan and the journey continues to be for them, from the mouths of babes, all the way up the ladder.  Thoughts of stopping the CB crossed over my mind earlier this week, but your words again erased them from my mind for the moment.  Direct cause and effect.  While most will never comment, it is those same people that continue to keep the rest of you out of the penalty box, and we should be thankful for them. 

I do want to mention that my friends and I saw “My Sister’s Keeper” on Tuesday night.  I did not read the book and I was very unemotional throughout the entire movie, while sniffles and sobs surrounded me.  Why you might ask?  “Really” I will say?!!  This movie, this book, is fiction!!!! While it might be based on a real life situation, maybe parts of it, it is far from real and the scenario in both the book and the movie are not what could and would happen in real life. 

Here are the facts about the fiction: (Don’t read want the movie details to be a secret until you get to see)

Yes, you can engineer and child to be the perfect match for a sibling.  I know people that have done it, personally, and I know if I needed to do so, I would do it. Period!!
Personal choice, you don’t have to participate if you don’t want to. 

In order for any cancer patient to receive a donated organ, they must be cancer free for what I believe is two years, it may only be one, but I do believe it is two.  I have a call into Donate Life to get confirmation of these numbers.  In the movie and the book, the patient was in full-blown treatment for her relapsed cancer. She was not a candidate for a kidney transplant, period!!  If you remember or still follow our 4A neighbor Dalton Serich.  Dalton is finally getting ready for his mother’s kidney donation, and he is two years post transplant, getting dialysis for over two years now as life support until he finally has reached that magic mark of two years free of his neuroblastoma.   We are hopeful and prayful that Daltons’ body will accept his mother’s kidney like Dom has accepted Marys. 

Since I did not read the book, I had no idea of what the ending was, which I now do. As soon as the movie was over, my friends very quickly told me the changes that were made.  Bottom line, while the entire movie seemed to indicate, as well as the trailers, that the sister did not want to donate to her sister, that she was sick and tired of being poked and prodded, I didn’t believe it. As every child that I have met, and I have met dozens, who either had the privilege of donating to their sibling, and those, like mine, who prayed to be the one and weren’t, could have cared less about the fear factor that holds so many strangers back from joining the registry and save a life. These kids who actually donated can tell you very little about the event, as they were sedated, and have very little discomfort involved.

Lastly, there were only a few misnomers as to the marrow donation that were inaccurately portrayed, and one was that filgrastim, the medication that those who donate through peripheral stem cell donation, apheresis, get to stimulate the growth of their stem cells, is NOT a growth hormone, which has a negative connotation.  They also talked about the long needles used the aspirate the marrow.  Who cares about he length, as do you think about he scalpel that they use to cut open your belly when you have a c-section?? No, because you don’t feel it. But guarantee any mother to be would be concerned if she thought the scalpel was the size of a machete, as opposed to a small knife.  They even show the hollow core needle in the movie, very appropriately sized for the job.    They also mention that the donor daughter was in the hospital for 6 days following what should have been an outpatient procedure, but that was due to complications, that of course happen to her, but in reality, happen to only a tiny fraction of donors in real life.  They also talk about the daughter donating her “parts” since birth, starting with her cord blood.  Hello, people, the umbilical cord was not even attached to the baby when the cord blood was taken.  Yikees!!  All in the name of the mighty dollar. 

The best part of the movie was the reality of the patient being done with the fight and in this case, the mother not.  This is an area that many who are in the fight, need to keep in mind.  The patient needs to dictate their treatment, no matter what their age.  Listen to them, at all costs, whether they say things you want to hear or not. 
The movie would have been perfect if at the end, before the credits, they highlighted the Be The Match Registry and Donate Life websites as a way to give HOPE to patients in need.

Thought provoking, and worth the price of admission.  Too sad you say to watch, well remember, there are people like me out there that lived/live this reality.  That reality is SAD, not this movie made for your entertainment that was based on a best selling book.  Keep this in perspective when those tears start to flow. Think of Evan’s mom, and Kevin’s’ mom, and Caroline’s mom, and Cadence’s mom, and Tyler’s mom, and Christian’s mom, and Savannah’s mom, and so on and so on and so on.

Perspective is the only reality you have in life.
(-the state of one's ideas, the facts known to one, etc., in having a meaningful interrelationship: You have to live here a few years to see local conditions in perspective.
-the faculty of seeing all the relevant data in a meaningful relationship: Your data is admirably detailed but it lacks perspective.
-a mental view or prospect: the dismal perspective of terminally ill patients.)

Love to you, Evan’s Mom