Evan The Warrior

Summertime

Summertime

Posted 10 hours ago

…and the livin’ is…well, not exactly easy, more like…busy. That’s a good thing. I am over the moon grateful that Evan continues to do well, three months running. He is scheduled for a big hospital visit in another two weeks.

Having the time off from the hospital has allowed him to hone his skills in such areas as:

Car Repair, Shaving, Camping, Arts and Crafts, Swimming, Negotiations With The Circus, Flying, Gymnastics, Culinary Arts, and of course, the tweaking of his ten year old skills, to wit, the Top Ten Ways To Incorrectly Slide Down a Slide and More Ways to Gyrate One’s Tongue Than You Ever Thought Possible.

I will update after the LP and visit with the doctor. Please pray especially for Madee, MT and Becka…complete healing is needed. Evan is stable and doing well, and we are thankful. We are ever cognizant that many in our extended ‘family’ could use your energies. The fight never stops.

We have some great news and some even greater news to share…soon.

Special thanks to Don, Sarah and, as always, my parents and family…for all the perfect touches you continue to paint on our canvas of needs. Thanks to all the special families that made it to DC and/or ordered a Marrow kit. Godspeed PP…may the road rise to meet ya! Looking forward to the texts from the road.

Thank you for checking in and as always, for your continued blessings and prayers. Be Well.

Kimberly and the boys~

Make photo slide shows at www.OneTrueMedia.com

Be The Match

 

I am consistently amazed at the power of one small Warrior Boy to impact a community and teach them about the world of childhood cancer. It seems a great task to deal with the ravages of the illness and educate as well, but rather than grow weaker with the burden, Evan seems to be thriving. Words like acute lymphoblastic leukemia and neuroblastoma are standard fare in conversations with my son. While the soul of a child is never about illness, this post today is about childhood illness and all you can do in the fight to end this war.
What troubles me about Evan knowing and using such large mouthfuls of words is that the particular phrases and deeds that call attention to one of our country’s greatest tasks, namely curing childhood cancer, are the words of a child and countless parents suffering alongside their children. The gold ribbons that bring awareness are made by cancer moms and the orange and gray wristbands are too often worn by brothers and sisters who have lost their sibling or are watching them fight.
The main focus of the war on childhood cancer and its cure is found on hastily written messages on cut up poster boards at rainy GMA Lionel Ritchie concerts-carried by cancer warriors, but on only one commercial product. Kids across the nation hold car washes and candy drives and recycle for their warriors. The families and the cancer patients themselves wear walking billboards on their t-shirts, screaming for the funding for research. Sick kids moms are designing logos. We read about childhood cancer in the Young Authors Day books of children, but hear very little about it on the evening news. How is it that the knowledge and the awareness needed for the cures for thousands upon thousands of children are in cups of lemonade sold by a four year old that battled the disease?
What seemingly is one of our country’s greatest tasks, namely the raising of our kids and consequently the cure for deadly childhood disease, takes a backseat to swine flu and Spector trials and the fallen budgets of our states. Our children are our best bet and it behooves me as the parent of a talented and special child with cancer, and the overseer of his friends in the beds beside him to remind each of us that there IS something more that we can do to help Evan and all the cancer warriors like him, who strive every day for their own cure and what’s more, THE CURE for all of the very real children battling this horrific disease process.
Typically, I leave my soapbox postings on what YOU can do, and on the fallen NOT so few, on Evan’s (other) Website but from time to time it behooves me to direct your attention to the many things we need to aid our warriors. Please bear with me as this is one posting that is near and dear to my heart and it is for ALL the kids.
There are some significant events taking place during the month of June. Perhaps one of the events will spark the match. I have often in speeches pleaded with the listener to recognize that while it may only be a “dime” or a “shirt”, to recognize that it only takes one…to tip the scales in favor of a cure…and yours might be just the one dime or shirt that sends us well on our way.
Please consider, especially during the month of June, when it is free, having your cheek swabbed. You can save a life. Yes, you literally can save a life. Join the MARROWTHON. From June 8th(NOW) thru the 22ond, the price is FREE. Thousands of patients hope for a bone marrow donor who can make their life-saving transplant possible. They depend on people like you. Take the first step today. The test is normally $100. For the MARROWTHON, it is free and involves nothing more than a cheek swab. Won't you help?


Another very “live” thing that you can do is donate blood and platelets. Even today my son teeters on the edge of low platelets. They are ALWAYS in short supply. Visit your local hospital or a cancer center near you.
Email Evan at evanthewarrior@sbcglobal.net to order an Evan The Warrior wristband or tee shirt and wear it. Tell people every chance you get why you are wearing it. I know that gray and orange bands and gold ribbons don’t match everything you wear…wear them anyway. Please consider wearing a Gold Ribbon proudly. They are free. Please visit fellow cancer moms, at www.rallyroundthegoldribbon.org and support the cure for our kids.

Have you joined People Against Childhood Cancer yet? Have you signed and spread the Petition Against Childhood Cancer yet?

CureSearch REACH THE DAY 2009 is coming-it will be the ninth annual gathering of the childhood cancer community in Washington, DC. on June 22-23, 2009. The event provides an opportunity for those who care about children with cancer, to share their story with our nation’s leaders, and to impress upon them that critical funding for childhood cancer research is needed. We come together in one place on one day to raise our voices for all children with cancer and for those who no longer have a voice.
The original gathering in Washington brought together a small group of parents who provided testimony to members of Congress about childhood cancer. At that time, many members of Congress and their staff were unaware that children even got cancer nor did they know that cancer was then and today, remains the number one cause of death from disease in children. Since that time, the childhood cancer community has been mobilized to make a difference in Congress. Since 2003, the voices and stories of families whose lives have been forever changed by having a child diagnosed with cancer have resulted in more than $12 million in Congressional appropriations to support the research of the Children’s Oncology Group.In 2008, we celebrated the passage of The Caroline Pryce Walker Conquer Childhood Cancer Act, landmark legislation that holds the promise of $30 million dedicated to childhood cancer research. We have come a great distance but we won’t stop – not until every child with cancer can be guaranteed a cure.

REACH THE DAY 2009 is our opportunity to make sure that this bill gets fully funded and that childhood cancer research continues to receive Congressional appropriations. Together, our voices are loud and strong.

We speak for the 12,500 children who will be diagnosed with cancer this year, and all who will be in the years to come. We speak for the more than a quarter of a million children in the United States who are now living with cancer, many of whom suffer from long-term, side-effects of their therapies because we have not yet found better ways to cure them. And most of all, we speak for all those children who live forever in our hearts. It is for them that we must dedicate ourselves to Conquer Childhood Cancer. Take Action. Get Involved. Please join us for Reach the Day. Questions? Contact us at reachtheday@curesearch.org, or go to www.curesearch.org

The impact of Evan’s Carepage family, his doctors, nurses, lawyers, teachers, executives, sheriff, scouts and their leaders, coupled with survivors-the powerful men, women and children that faithfully support our cancer warriors on these and other carepages can and should and WILL make a difference. If each of you that read Evan’s carepage contacted just 10 more people, with the information above, we would reach 10,000 people with just one posting! Imagine that! Evan’s impact in this worthy endeavor can be tremendous! Please visit www.evanthewarrior.com to read about the amazing efforts underway in Washington later this month to REACH THE DAY! Thousands will be descending on our Capital to raise awareness. Mark your calendars for September-CHILDHOOD CANCER AWARENESS MONTH. Plan to wear yellow on the first day of school and honor the children. Eat Fla-vor-Ice all summer and write the company thanking them for being the FIRST to endorse childhood cancer on a product, much like the pink ribbons on products we use every day. Every dime helps. All this can be found on www.evanthewarrior.com. (links broken tonight ;-()
Let’s share the load. Let’s not loose anymore cancer and chemo warriors than we have to. Simple tasks, made simpler with your help. Thank you for all you do! Special prayers to POP and fond HIGH FIVES to Baby Jack and Roman for your good news. The biggest prayers you have need to be sent up for Trey, a little boy undergoing a clinical trial in his HUGE fight against neuroblastoma. Our deepest sympathy to Corey’s parents and Mimi and family, along with Coleman's-just SOME families missing their children. Thanks to Madee and LRB-for your special message for Evan and for you, Madee, all the prayers in the world for your recovery, dear girl.
No parent should have to see an empty preschool desk chair and momentos of their child’s funeral on their kindergarten desk. Brothers should run Thomas trains on sidewalks and tables, not the etchings in a cemetery gravestone. Graduation is a time of beginnings, not endings. My heart breaks for all those, far too many, far too early, who have lost loved ones. Continued prayers as well and as strongly, for all the special children who Fight On.
Quick newsflashes and a brief slideshow, as I jump off the bandstand.

Clinic went well for Evan this week. Chemo is back to 100% levels. School’s out for summer-thank you Highlands and especially, the dear and talented teacher and ‘friend’, Mr. Ron Bonja. Godspeed Mr. Groch-you definitely win the first ever Evan the Warrior Zest for Life Award.
The 10th B-day party was the “best ever”(thanks BT & family). Special thanks also to Gill H. and Kingston Elementary School and the ETW Committee, to Kayla for her very special book and to the Scouts for the Dunk Tank. Please go eat Red Brick Pizza locally and thank them-again- for their amazing support of Evan. To AQMS Moving and Storage-thank you –truckloads- for your generous service all year. Harley-bones and beefy biscuits! Gina and family-forever grateful,and to the families of Highlands, who share bottles and cans and to the Hare Family-you will be SORELY missed. And finally to the Tobon family-you epitomize ‘loving thy neighbor as thyself' and we are forever indebted.
Thank you for checking in on our boy.

It takes a village.

Be Well.

K and ETW

PLAYDATE IN HEAVEN

Cast Your Cares

"In order to bring home an elephant, one must not get off the trail for rabbits."*

How many of you remember my post about the elephant in our kitchen? Leroy, the Leukemia, is a large looming elephant who sits in the middle of our galley room floor, content and barely budging. I don’t recall that Leroy had a name last post, but when you live with something long enough, it helps to name it. Wasn’t it Randy Pausch who said that his father taught him that if there is an elephant in the room, to introduce it?

Leroy, this gargantum lazy gray matter, bearing a remarkable resemblance to the cells and blasts of lymphocytes, doesn’t mind that the space is tight in our home. His burdensome self is still with us. No matter what we do- there he is -requiring all manner of time, attention, money, wherewithall, stamina, strength and cracked peanut shells. Leroy is a long standing “acute” focus in our lives. Not to worry though, for we still have our sights set on the complete eradication (gently of course)of Leroy, the cumbersome disease with a trunk, all cloaked in gray. Leroy’s return to the jungle where he belongs is of paramount importance to us. But. Focus lessened. Cut to Crazy. We have deviated from the trail of the elephant for a loathsome, loose rabbit.

Meet Fredricko the Very Naughty Fracture. Fredricko came out of nowhere, seemingly born in the instant I sat down after Evan’s uneventful (for cancer anyway) CHLA Day Hospital visit. Let me tell you, Fredricko came to us quite suddenly of a Tuesday afternoon and he is quite the witty soul-a ball of moving fur, feather in the wind, catch me if you can sort of critter that has somehow slipped in our front door and caused another ACUTE situation, as in sidelined with months of MD busy, possible surgery down the road sort of acute in my non acute son.

I am surmising that Fred the Fracture slipped IN, like California sundowner winds, when our best attentions were focused on moving dear ole Leroy the Leukemia OUT the door. Life has a way of doing this to us.

Fred the Fracture stares directly at us, with those deep and dark Adam Lambert eyes, whiskers flinching, chomping all the while on the leftover greens and herbs in the dirty kitchen sink, staring mock-eyed, right into the faces of the youngins’ and the Leukemic large gray one, who rocks from side to side with agitation. I have armed the less acute child (for now) with pink and orange flyswatters-and focused him on the task of capturing Fred, so that we might contain him TOO and somehow get on with the business of leading Leroy out the door.

Fredricko the Fracture is loose and Leroy the Leukemia is too!

OK, ok, oK…so we don’t have Leroy the Leukemia loose in the kitchen and we are not running after Fred the Fracture, or is it the reverse? Therein lies the problem…my focus on the trail. It’s suddenly become busy-er. A gigantic part of my time is spent focusing on Leroy, but for an even greater time, I focus on his complete eradication, as gently as possible of course. Leukemia is an acute focus, but so is the living and living free of Leukemia. I was beginning to think we were on the Happy Trail and could pause for some Chex mix, rest and replenish our supplies.

Wrong.

Leroy has laid down and the fire that surrounds him continues to creep upwards in containment percentages. Laying down. Leroy. The Leukemia. But that darn rabbit. I am now off the trail of the elephant for a rabbit. He is so wide awake, when measured against my tiredness. No rest ... When it rains…Never a dull…On top of everything else bright eyed and bushy tailed and he has wrecked havoc in our home and with our week.

I had little else to do, I suppose, than travel to LA for Day Hospital, oversee a Mission project, replenish earthquake water supplies, replace the brakes and the radio and the windshield wipers on the old old car, fix the jammed door lock, find a new house to rent, arrange playdates, school visits and end of year activities and graduation, taxi ten times a day, shop and fix healthy dinners-aroud the elephant and for him, and keep the house swineshly clean in the hopes of avoiding an unseasonal flu and last of the year cold, deal with a steroidal child and then a diabetic one, harbor hundreds of emails, care about the carepage kids, and fill with purpose and fun and purposeful fun every waking moment of my home bound son. By myself.

We have spent the week just past crossing OFF many of the normals for my left handed competitive bowler of a son on the eve of a summer that was about to be spent swimming, golfing, bowling, attending football camp, traveling and traversing the busy vistas of a teen. It is sad, to say the least, to see a son scramble, one handed, over and around the elephant, for the loose and leering rabbit.

OK. Pity party is o-v-e-r. We get busy, all of us do. Thankful doesn’t begin to describe a bus-ier little man and his brother and the mom that orchestrates. Things happen. The best laid plans…I get that part. I really do. But, c’mon…Throw Us A Bone!

CUT to Episode Ten. “What Did He Do to His Hand?”

This is where we obtain our Othopedic Degree to supplemement our Hematology/Oncology one.

The official diagnosis is: Nondisplaced bone fracture L R F P1 at MCPJ. Something to do with an avulsion and joint involvment...Don't ya just love it when the explainantion is more convoluted than the diagnosis?

Episode Eleven- How In The World Did This Happen?

Baseball game. Bases loaded. Grounder to left field. Slide into first. Hand in the way. Otherwise known as loose Ipod and Phone in pants pocket and wrentched finger on three teams of bowling hand, writing hand, golfing hand, swimming hand, fishing hand, cutting meat hand, washing hair hand... did I mention bowling hand?

The message today is simple, even as the story is not.
Life has a way of changing, after scrambled eggs in the morning.
Sometimes, just sometimes, even if you do everything right, the Zoo comes to you.
Just ask anyone here. What we say is true. It has happened to us. Twice now.

Leroy the Leukemia is not something that one can invite to dinner and then see to the door. Fredricko the Fracture can finesse even the best laid plans, in a big and loathsome way and in a terribly short time. We know all about the closing of one door and the opening of another, and that things will get better, and that these things happen, and that this particular event is not life threatening. But, I have to tell you, there are many parents of far too many children in my Parent Association that are suffering greater losses than the ones I mention here. I know all about them and there is no relief in sight. Today I know first hand the losses in the world of illness and the significant loss(es) of a sibling’s normal, in the paranormal world of cancer. That amount of loss and sorrow needs some small amount of grieving to be pallatable.

I would be remiss in not teling the story today to remind those of us who read to please, please, please…

Please…

Hug your kids tighter, kiss them as they sleep (they’ll feel it), take every opportunity to support them in their games and in their glee. Know that each day we are all given a golden gifted span of the same 24 hours of richness to love on these children, learn from them and watch them grow. The same could be said of marriages and friendships and family members. Twenty-four golden hours-little else is assured- in this fire, wind and water soaked, accident infested, illness ravaged, hopeful world we live in. Twenty four hours, around each and every corner of the night, we wake to this one day, for however long. The precious moments that our children and loved ones are freely romping and ramping up the world are indeed great and glorious moments, and they are the sum and substance of what we should be sharing.

I entreat you to treasure them-the moments with the kids and the spouses and the friends and the family. The mortgage and job search, the pile of bills, classes, yard work, pourous surfaces, and stock market will still be there-maybe not so the kids or at least with us in the carefully planned and expected ways we think we have come to know.

Life can and does change, after scrambled eggs in the morning and sometimes-just sometimes, the Zoo comes to us.

Be quick to forgive this week and slow in your loving. Consider healing the fractured relationships that plague you, and if you can, act on that thought. Cast your cares to the wind. Happiness can be found in anything that makes you smile. Enjoy your week.

More later from our side of the Zoo and with love,


Mom, Ox, Ryan, Fred, Evan, Leroy and Bubba

-----------------

*Author unknown. Names have been changed to protect the innocent and bear no resemblence to persons, people, places, animals or things. No animal has been harmed with this publication. Quite the contrary. We promise. And for anyone reading with the name Leroy or Fred, please consider this your invite to dinner. ;D

One Theory of Relativity

 

“I sometimes ask myself how it came about that I was the one to develop the theory of relativity. The reason, I think, is that a normal adult never stops to think about problems of space and time. These are things which he has thought about as a child.” Albert Einstein

Evan is approaching his two year mark of the diagnosis of Leukemia. If we held a Press Conference and he was asked to look back over the first 730 days of treatment at what has troubled him, surprised him, enchanted him and humbled him, he would tell us that he is:

Surprised “…at how long a lot of this treatment feels like it takes and how fast alot of it is- kinda like everyday feels, it either goes by really fast or really slow.”

Troubled by “…not really anything”.

Enchanted by “all the new friends I have made and you, Mom”. Is that what ‘enchanted’ means?”

Humbled by “...the sky. Sometimes I look up and imagine that if I was looking down, ‘Evan meets the sky’, and I saw me, I would be really small. I don’t think I could even really see me. But what is so cool is that I can see the sky, which means I am ‘big enough’.

I know his feelings to be true. I found Evan the other day, outside. He was lying on the top of our car, looking up. I asked him what he was doing. He said he was “just thinking about birds”. When nudged further, he said, “I wish I was a bird. They are free. I just want to be a normal kid. How much longer till I can be a normal kid, Mom?”

My son’s question has troubled me equally as much as his diagnosis. My kid has in no uncertain terms surprised me (and a few docs), many times along the way. He has also been a source of childlike enchantment for me and very definitely knowing him has humbled me beyond definition. His fight has been courageous, troubling, enchanting and very humbling. Now, it becomes my job to fortify him and to help him find a bit of ‘normal’ in the midst of war. There are far too many play dates being had in Heaven.

There is a direct correlation, in my mind, between Evan’s counts and his yearning for normal. I can’t site the medical treatises for my deduction, but I do know what we live. For the first time in two whole years, Evan had an ANC in the upper 2,000s. You and I are somewhere between 2,000 to 7,000, and these are the numbers that allow our bodies to fight infection, make blood cells to ward off a host of diseases and importantly, sustain energy and stamina levels. For Evan, a higher ANC allows him to recover from each and every daily infusion of chemo. Evan being held in the low 700 to 900 ANC range tolerates his meds, but has little else in the way of energy. It is the way of the fight, for my son.

Since Evan’s protocol states that he must stay in the 750-1500 ANC range, so that his white blood cells don’t proliferate into blasts of Leukemia, we see a child less than feeling normal with practically every post. Because he slipped the bonds of this protocol for a few days, when his chemo was held, I got to see my “normal” Evan for a few days, albeit he came to us, much older than the innocent normal seven year old he was when he got sick.

Normal Evan ordered and normal he got! Let me tell you, I struck up the bands! There he was, looking at the birds and asking for normal. God love him! This week, chemo was increased again and he’s slipping back into the low counts and the not so eager, lesser world-the not so normal world of maintenance- again, but for a few days, before the flu outbreak and the depression of his counts, I saw him and we opened the door wide to NORMAL.

Evan had a sleepover. He ate out. He had water fights. He jumped on a trampoline. He ran around like a wild maniac. He stubbed his toe. He stayed up too late. He ate junk. He got yelled at. He asked for normal and he got normal. I had to do it…yell at him-Just once. After all, he needed to feel normal.

I have been told that he will come around again…and that it will take a couple months after treatment ends before this normal happens. I trust the moms who have paved the way before us and I believe what they tell me. And you know, once he does finish treatment, I think I just might enchant in the normal world again too.

On the 730th day (nearly) of the anniversary of Evan’s treatment, I call your attention to one other Theory of Relativity, namely, something called time dilation. Moving clocks are measured to tick more slowly than an observer's "stationary" clock. With that in mind, I think the better tally for Evan and for all of Evan’s friends, new and old and young and young at heart, is not so much the days we have under his/our belts, but, instead we count the days, like today, that notch another day of living in the belt we call life. Time will take care of itself.

Enjoy every single solitary split second of your normal, wherever you find it and whatever it is. Hug your babies and thank them for being normal. Thanks for checking in and for the messages you leave each week. We read every single one of them together and they mean so much to us. If I could find an extra five hours in my day, I would post more often, but alas, such is not the case. If any of you hold the key to that ticking clock, please share.

Be well.

Kimberly
A/k/a
Evan’s Ox* Mom
*Evan read the funny papers and has proclaimed that I shouldn’t sign “oxoxox” anymore because people will think I am an OX!
Now, that is not normal!

A Letter From Heaven...

 

I am not one to write long letters, so bear with me. This is the most powerful message I have yet to see.

My daughter in law called me this morning, very upset. Not uncommon since my son has passed. We all have these days. She said she painted the bottom of thier boat, which was always my sons job in the spring. She cried the entire time. She said she visited his grave twice this week. Talking to him, telling him everything she is doing, really looking for approval.

 

She told him she needed a sign from him. She said 'Why don't you give me a sign? Everyone else gets them? Why not me?" When she was leaving the cemetary, her dear friend, Joey, called to tell her he had been at her house cleaning garage. He came across a folder that contained a couple of papers from pre-marriage classes, 11 yrs. ago. Prior to getting married in the catholic church, you must take these classes. She had forgotten about it until today, when she found it. She said there were their vows, promises, dreams and some jokes as well. It was as vivid as if it were yesterday.

 

There was one paper in the back of the folder. She has no idea how it got in there, but we certainly know where it came from.

Here it is:

THE DAY WILL COME when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don't call this my deathbed. Let it be called the Bed of Life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes of a woman.

 

Give my heart to a person whose own heart has caused nothing but endless days of pain.

 

Give my blood to the teen-ager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

 

Give my kidneys to one who depends on a machine to exist from week to week.

 

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain.

 

Take my cells, if necessary, and let them grow so that, someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

 

If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.

 

Give my sins to the devil.

 

Give my soul to God.

If by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

 

If you do all I have asked, I will Live Forever.

ALPHABET SOUP

 

 

       Recipe for a Smile

Preheat to a balmy 104 sunny So Cal degrees.

Bake at home, no hospital needed.

Begin with Clear Spinal Fluid…NED!

ADD:

1/2 last tolerated dose of chemo-restarted

2.37 WBC and improving counts

5 day Steroid Pulse- complete.

2 more days of BG checks q 2 hours X 24

1 IPod playing A NEW DAY, written for Evan. Dom and Eric-too cool!

2 Haircuts…thank you Belinda and Ben!

1 bundle of very long hair to Locks of Love (moms)

2 “something old/something new” from DKB

1 stupendous teacher

1 uber fantastic brother with a 602 series

1 pug puppy, or animal of choice

6 boxes of Kimberly Clarks, 3 for each boy

1 catatonic but improving mom

1 video system

1 park swing

Stir in rest and rejuvenation, or at least know when to switch from roller coaster to carousel ride.

Buy ride tickets in advance.

Use the park map and pack an extra outfit.

Add hydration as tolerated, plus another 8 ozs.

For good measure, always serve water and drink before you are thirsty.

Combine 1 group of amazing 5^th graders and tables full of coins. Kayla for President!

Toss in hundreds of cans and bottles form Highlands Elementary.

Mix TNT – (Teams that is)

Fold 2 Movies, 1 Micah and 1 Mission: Have Fun

Reduce stock by 1 Less Tooth- blend with $5 Tooth Fairy Visit

Stir in gently 1 Holiday (finally) NOT on steroids (use preferred candy and colorful hand decorated eggs).

Add slices of delicious fire roasted red Brick Pizza. Share!

 

MIX all ingredients together, by hand, until well blended. Smooth and lumpy is good too.

Add pounds of Boy Scout motto.

Review and practice said mottos whenever and where ever needed.

Be very very thankful.

Cook with love.

Love the cook.

Even kiss her.

Otherwise, learn to cook for one.

Under every circumstance, cook with joy.

Talk at the table.

Prepare family for every fire drill-

Practice above recipe so that you have mental and muscle memory to fix the meal under extreme duress.

 Learn that the bumpy route to “Vagus” is fraught with Michigan lefts…or is it rights?

Go anyway.

Bake on potter’s wheel, smoothing the rough edges, molding to fit the circumstances, redesigning as necessary, never giving up, and always starting over.

Get dirty or at least be a messy cook, just once. Notice how it feels.

Check often.  Meal will not cook by itself.

Clean up as you go or leave whole piles in  the sink for better days. No one cares.

Never argue over the kitchen sink or throw it into one.

Learn to recieve.

Have the kind of friend who scrubs your sink. Let her.

 Make this kind of friend by being one.

Serve with prayer…lots and lots of prayer.

Pass the strongest prayers you know up for Corey, Harper and Johnathan and all the little children like them-unceasingly, before and even after a meal.

Add Cure if on hand, otherwise HOPE for the cure.  Recipe best served with an acceptance of where life takes you and what you have rather than what you have not.

For good measure, meal must be had with sides of thankful…gracious, heaping tanks of thankful. See above for serving suggestions.

Design a table fit for angels. Rest in Peace Angel Army.

Place comfort in the empty laps of mothers and on every hospital wing pray for wisdom for the caretakers and glimpses of the sunshine.

Fold cloth napkins into incredible animal designs. Let the kids choose what to do with them. Unpack above referenced outfit.

Use your best silver, but let the kids set the table.

Pick wildflowers

Release the bugs you find in them

Put flowers in a plastic hand painted milk jug in the center of the table.

Love how it looks.

Realize that broken china is just that and place on chargers or save for the cement monument of your child’s handprint.

Surround family tablecloth of love.

Let the kids light the candles. As many as they want. Turn off ALL the other lights. You really don’t need to leave just one on.

Relish the symphony of the family’s voice at the table and notice in the din, how soft the moment feels.

Let the one who needs it most sit at the head of the table.

Listen to what they have to say. Just listen.

High Altitude Directions: Not for the Nurses and caretakers. Realize that every day that the hospital elevator doesnt stop on a floor for you or your loved ones, is a very good day, indeed.

Go out for a walk after dinner, not dessert.

“See” if you can hear coyotes, or bullfrogs. Catch and release fireflies in old mayo jars with rusty lids.

Wish upon a star. You know what to wish.

Whisper “Amen” after you make your wish. It’s always the same, isn’t it?

Think about how to make it…that wish- happen.

As you walk, notice the feel of your feet hitting the pavement and the breeze against your cheek.

Look down towards the young child, in at the man, across at the person or up to the Heavens…

Enjoy the moment-

It’s all we are promised.

And, finally,

Add…Smile

Time Change

We Doubt Not...

 

We doubt not of a fair and lucky war*, but, as Garrison Kellar once said:

Some luck lies in not getting what you thought you wanted, but in getting what you have, which, once you have got it, you may be smart enough to see, is what you would have wanted, had you known.

Evan is insistent that we begin, in ernest, preparation for St. Patrick's Day. When you are nine, any day is cause for celebration and when you have cancer, each hour is worthy of a holiday. So, in honor of the little lad, I have been playing a game with Evan. The pictures will evidence the great thought that has gone into our game and the time it took Evan to think of his answers.

The game is called, 25 Reasons I Feel Lucky

I'll go first.

Mom’s List

1. Influenza has become a noun again. It was a verb last week.

2. Evan’s Methatroxiate issues have resolved.

3. The Ironworkers 7 were named Persons of the Week.

4. Paul Harvey taught me to always look for the rest of the story.

5. Mr. Grover's second graders in Maine made us laugh.

6. Mr. Grover's second graders in Maine made us cry.

7. Mr. Grover's second graders in Maine reminded us, once again,that people near and far think about Evan, all the time.

8. Big Evan's mom still totally rocks.

9. So does April, our new friend.

10. Highlands Elementary School drinks a lot of water and they still can load AQMS Moving Vans. Thank You!

11. CHLA and Doctor Mascarenhas are an amazing Team!

12. The song “Hey Evan” is absolutely perfect; so is Joe the Piano man, who wrote it.

13. Kayla is appointed head of the Hesperia ETW Committee and spearheads a new movement. That girl has STAYING power!

14. I called 9-1 (1) TWICE, but was able to stabalize Evan and could, "luckily", hang up, each time.

15. Evan got all A’s and one B+ on his report card.

16. The telephone brings Evan and Logan and Micah together.

17. Betsy and Gil let the kids use their phone, despite really needing it themselves.

18. A friend reminds me that my dreams are still alive, and my soul is at peace, even as someone else notices that I have aged.

19. We have each other.

20. We have today.

21. We belly laugh around here...alot.

22. We cry, just a little.

23. We heal...over and over again.

24. We pray. All the time.

25. We are very, very fortunate.

25 Reasons I Feel Lucky
by Evan

1. My family

2. My friends

3. My doctor

4. My nurses

5. My teacher

6. My school

7. My dog

8. My dream of more dogs

9. And cats

10. And monkeys

11. And snakes

12. And hamsters

13. Hot dogs

14. Mac and cheese

15. Video games

16. Music

17. Cub Scouts

18. Did I say dogs?

19. What about cats?

20. Houses on hills

21. I can’t think of one for number twenty one

22. Orange jeeps

23. Lollypops

24. End of treatment

25. You. Mom.

Clinic in a few days. I intend to have a serious discussion with the doctor about Evan's hypoglycemic episodes, which seem to be getting much worse when he comes off of steroids. Perhaps, since Evan is not on Clinical study, there can be a deviation in protocol, such that he is titrated down off of the drug. I am thinking this might prevent the rapid downward spirals we have been seeing lately. We'll let you know. Thanks so much for checking in.

May the road rise to meet you...keep those toes crossed and have a great week! More after Clinic.

xoxo,

mom

*shak

We Will Recover!

 

Have you heard any number of the speeches that have been given in our country lately? It seems there is a lot to say. I found the hero Capt's speech before the Gov't panel riveting and the short speech Lance Armstrong gave here this weekend, right or wrong, a testament to the sometimes miracles cancer can create. I applaud both. On television yesterday, we heard yet another enthusiastic speech, this time, from our President. I agree with the notion of recovery, as a country, and more,as individuals. Did I really hear him speak of cancer, and in particular, a cure? Lo and behold, the connection to a cure and our future.

I hope that you had occasion to enjoy the show-biz glamour the Academy put on in our City of Angels. I particularly enjoyed the personal vignettes given by former iconic stars and the teary eyed nominees who received these words, each in their own way honored, as winners, regardless of whether they got to hold the coveted Oscar. I enjoyed the Oscars not only for the momentary diversion they provided for me, but also for the dreams and hopes they represent for little girls in bathrooms holding shampoo bottles and for the precious children in Mumbai, who smiled with every ounce of their being here in the US, despite soon flying back to the slums they call home. How I love the independent film!

Most importantly, I watch the Oscars every year because my favorite award, which is probably not what you would expect, gets a moment front and center stage, regardless of the fact that the winners of this award and their speeches do not ever get our famous Miracle Mile town abuzz. Notable to me is the Award presentation for Documentary 2008, which speaks to the tremendous responsibility that befalls a documentarian.

I am so grateful that I live in a country that allows me to put Evan’s story out, but the living with his cancer and then the taking it upon myself to write about the experience is an incredible responsibility. Documenting cancer is so much like the process of writing a speech and, more, like the making of a reality piece. The truth of the words and worlds of cancer bespeaks to me of a trust and incredible responsibility given to me by my son. I liken the responsibility I have to Evan and to you, the reader, each time I post a Carepage, to the words spoken by some of our most respected makers of the documentary. Recall these words:

It really has been a revelation, what has happened. You can go out and tell a high quality story…that doesn’t mean you have a story to tell. You have to be lucky enough in life that you are at the right place, at the right time, with the right subject. The thing that’s unique about documentary is that we deal with real life. We are dealing with people in real situations and there’s something to be learned from their experience. So much of what goes into the making or the telling off a documentary is the trust that’s entrusted to you to get it right. I’m completely obsessive when I’m working because you feel like that’s your responsibility, that’s what you have to do, that’s the trust that has been given to you. And, with absolutely every fiber of your being you have to be completely true to that story. You hope that what you experience in the moment…when you're there, you know, the joy, the sorrow, whatever, the surprise… something that you can communicate to an audience, so that if you don’t, you leave a story in the editing room, a story that could have persevered…,you lose something that could have illuminated.

For me, most of the time the subject of Evan's cancer, i.e. the living through it, can be likened to the many wads of crumpled paper thrown upon the floor when one prepares a speech. Living with cancer, whether as the patient or the caregiver, causes many thoughts, hopes and dreams to lie, unfinished and altogether changed, crumpled and left by the wastepaper basket. Ream after ream of edited and unedited film and photo lie idle, broken and cut on our computer. Cancer causes scores of proposed ideas for Carepages to go unfinished, and scene after scene to be changed unwittingly. Cancer causes whole dialogues I have with my son and myself and the physicians to become remarkably foreign in substance, changed due to unforeseen circumstances or left by the wayside, in some ill fated and old forgotten way. Needless to say, I am a huge fan of the documentary and the living and the knowing that films such as these portray.

It goes something like this,as I think about the posting: I must prepare a Carepage. Hasn’t it been almost a week or more since we last posted? What would Evan have me write? .

This past week was about steroids and the rain and the cancelled trip to the hospital. No one wants to read about the seven hours by the phone frantic to get a new appointment,or the pitfalls of not getting rescheduled, as it relates to subsequent doses of chemicals. . The focus is wrong.

For Evan, this week was not about carepages, medicine, doctors or clouds. The week just passed, for Evan, was about the hike up the hill and his speech and everything he was doing in the moments when he wasn’t feeling sick or rehearsing.

What can I possibly write about that will document my son’s nearing the 100th week of chemotherapy? I wonder if I posted the scores of medications this child has ingested, if anyone would believe the colossal amounts? I can barely fathom, much less report, the medication records of my son….Something like one thousand doses, of medicine, of chemicals and poisons and he is only one halfway ”there”. How can I ask the gentle reader praying for Evan’s health to absorb this number?
Back to this Carepage post. Crumple up another page. And another. And another. And so it goes. Speeches and past living, left unwritten, unspoken… in favor of the moment.

Cancer does that. It crumples up page after page of plans, hopes and dreams and everyday thoughts. Cancer changes not just the thoughts that make our days, or the words on the page. Cancer changes the very lines on the paper. The lines on the page aren’t so defined. Goals blur. Tears stain. Tiredness beyond lab values sets in. Thoughts merge into one long treatment cycle, day after day after day. The good in the change is that the days and the thoughts become very simple, much like the paper we used in Preschool as we learned to write our name. Big paper, big names.

Sometimes the Carepage doesn’t get written. But, I know one simple thing. Today IS the gift and for just this one day, I hope Evan has a good day. I pray each and every moment that he feels alive when he wakes. I hope to God he learns today and more than that, much more than that, I pray that he laughs and loves, even if it is just his puppy or a chuckle at a show on TV. Was it Paul Newman who said there are two kinds of people…those who love and laugh and those who do not? I think he got it, you know…in fact, I know he did.

Evan wrote a speech this week too. No, my little man didn’t stand before a great and grandiose audience to give his speech, but to this thespian mom, it was just as notable. He prepared a speech for his Toastmaster assignment on, the making of a sword…something he deems essential to a warrior. The most recent Flip Videos on evanthewarrior's youTube channel are more for the Scouts, and the children and Evan’s educators than for the general reader, but available.

Clinic went well last week, albeit late, due to Storm Watch in our neck of the woods. Somehow the living in Los Angeles… with all its news, weather, money and whatever else seems to be falling from the sky, prevented us from making our appointment, a first cancellation in 18 months. Somehow, it never really sinks in that I cannot realistically plan anything, with cancer as my guide. However, with that said, I profess NEVER to reschedule a hospital visit again. Sometimes I forget, just for a second, that this is -- this is-- a hospital setting and this is a very serious disease and these are extremely busy clinic with beds booked months in advance, not to mention given up to the newly diagnosed. Changing horses in the middle of a rainstorm is not always easy, like the rescheduling of the eldest’s cleaning at the dentist. Many thanks to Dr. M’s esteemed Fellow for seeing us one day late and helping me to land Evan back on course for the next and subsequent doses. What a difference a day makes! Evan’s numbers look good. No medicine changes were made, although they could have been. The thought is that with Evan now ingesting 125% of chemotherapeutic doses, to up them even further, rapidly, could wreck havoc with his counts. We don’t want that. I make a mental note to post soon to explain to the children, especially, about “how good Evan looks”, and how that relates to blood counts and blood cancer and chemotherapy and the famed immune system…but there I go again with a plan for a Post.

Last, but certainly not least, this week Evan and I celebrate one of the most astoundingly talented and silent rising stars among us. Ryan celebrates his 14th birthday. Happy Birthday Ryan! Ryan is the heart of me, just as Evan is the soul, at least in my role as their mom. Ryan, I honor and applaud your request to remain relatively anonymous here on the stage they call cancer, but today it simply must be said that not a second of my day goes by that I do not feel immense pride and total joy at the simple and astounding gift that comes with knowing you and watching you grow. I am exceedingly pleased at your path and the progress you make in life, seemingly despite the circumstances. You are a solidly respectful, intelligent and stoically sensitive and compassionate young man and I am so proud to be your Mom. I honor you, on your special day, and always. May all good wishes, hopes, health & dreams be yours, forever & ever. I love you, Ryan.

In parting, words from Slumdog Millionaire: ‘Jai Ho'. May the victory be yours! We will recover! These are the sentiments I treasure, along with you, the reader.
xoxo,
mom