Evan The Warrior

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

Momfidence: Stop, Kiss and Listen

Take the time to show your loved ones you care

By Paula Spencer Posted January 15, 2009 from Woman's Day; February 10, 2009

Your child complains of stomach “owies” after an evening of pizza, playing and fishing. Did he eat too much?, you wonder. Fall down and get hurt? Is it a virus? It doesn’t get better overnight. It gets worse. Appendicitis? Maybe it’s something really bad, you worry on the way to the emergency room, like an appendix that’s already ruptured.

You never once consider—not even after your child is transferred to a bigger hospital, not while facing the somber doctors, more of them by the hour—that your happy, hardy preschooler has a tumor. Not even as your own sucker-punched gut absorbs this news do you believe that the light of your life with the charmer grin, a little fellow who’s never been really sick a day in his little life, might die.

Moireen and Aaron Ruotsala certainly never imagined a horror like that. Then they lived it.

“One day last July I was driving behind a guy I know whose dad had passed away of cancer and I thought, ‘Man, I’m fortunate I never had to deal with anything like that,’” says Aaron, who runs a concrete business with his family in Upper Michigan. Four days later, his son Cole’s stomach began to hurt. “He had caught his first fish that day, a four-incher that to him was a whale. He was so proud.”

Cole was diagnosed with adrenocortical carcinoma, an aggressive, inexplicable cancer noted for its rarity: The odds of getting it are literally one in a million. He’d just celebrated his third birthday.

The family’s summer plans of taking Cole and his younger sister, Chaneille, camping and to the lake turned into white jackets, tubes, daily stats and the sight parents dread most, their child writhing in pain. The tumor, the size of a man’s fist on discovery, within days grew as big as a gallon-size carton. Surgeries and chemotherapy were powerless.

“Every other time Cole needed us, we’d kiss him and make it better,” Aaron says. “It’s the most helpless, humbling feeling you can imagine to have your son look you right in the eye and say, ‘Daddy, help me!’ And there’s nothing you can do. Nothing but love him.”

Cole died in his parents’ arms on September 19, 2008. From fishing outing to funeral in just eight nightmarish weeks.

If right about now you’re itching to go hug your child, do. That’s exactly how I felt when I heard Cole’s story from my cousin Mary Jo, who lives in his hometown. Looking at my kids at dinner that evening, I found myself focusing more closely on their words, not just whose elbows were on the table. I lingered one-on-one with each child at bedtime.

Sadly, this awareness tends to fade. I know well that it’s all too easy to get sucked back into the morning’s annoying rush of lost shoes and forgotten lunches, the barest of byes as someone slips out the door. Human nature, I suppose. (As I write this, in fact, I’m “here but not here,” tapping away at my computer.)

But something about Cole’s story—the tender age, the randomness, the horrible ferocity, the swiftness—makes this love-one-another message especially sticky. And I mean that in the positive 21st-century definition of the word.

“I remind myself daily that so long as my kids are safe and healthy everything else in my life is just ‘stuff.’
I hope that being mindful of these things is a small way that I can honor Cole’s memory,” wrote Wendy Woolford of Overland Park, Kansas, to the Ruotsalas. A perfect stranger, she happened to see a prayer request for Cole linked to a website that was originally set up to send family and friends updates about him. Now she can’t forget him. Through the magic of forwarded hyperlinks, thousands of strangers sent the family messages of hope, and shared how their own lives were changed.

I’ve noticed myself being more conscious of “de-cell-erating,” as in, putting down the cell phone, turning off the screens and really tuning in to my kids. Mary Jo says that because of Cole, she’s been playing outside with her two grandsons for hours, even after she’s tired. She also “adopted” two families whose children have cancer through the foundation Cole’s parents set up to help some of the 10,000 other parents who go through this dumbfounding experience each year. In its first month, more than 425 people signed on to send care packages of gas cards, toys and the thing that helped the Ruotsalas most of all—daily emotional support.

Will all of our good intentions continue? I hope so. Anyone who hears this story, at least, has an unforgettable new face on the message that, despite the crush of daily obligations, our very first obligation in life is to connect.

As Aaron says he learned in the worst way possible, “All we have are relationships. Nothing else really matters.”

Incredibly, one month after burying their firstborn, Moireen gave birth to a healthy third child, daughter Whitney Mae. You bet she and Chaneille are blessed with parents who don’t take one second for granted. And thanks to their
big brother, the boy who lives on giving virtual hugs to thousands of kids, both sick and well, I’m logging off to find somebody to love on myself, right now.

The Dawn of Hope

Clinic is over, finally. The LP did not reveal a relapse, and for that I am thankful. Evan’s veins held up for his treatment. Yeah on that end, too. Last month, he suffered an infiltration of chemo during an infusion which literally caused a blistering and burning, from the inside, out, of his skin. Thankfully, today, that did not happen. He doesn’t have many options, if he loses this vein, as to give chemo in or near any joint area is not possible, due to damage that could occur to the joints. He is insistent that he doesn’t want a port or PICC line, as, to him, this would be a step back. For now, we acquiesce, and spend a great deal of time in the IV room.

I asked about the DNA marker in the news of late with reference to his particular diagnosis. I am still wrapping my mind around the answer and so I will spare you the details. Suffice it to say, that even if we were to see this road sign, his map would, at this point, remain the same, for quality of life and too early in the research findings to tell, reasons.

Evan’s counts came back good again, and as suspected, his chemo meds were increased. Evan has just entered Phase Five of Long Term Maintenance. He received one boost to his prescribed chemo for age and weight and body mass increases and another boost to another drug, for counts, which are “too good”. Precautions for colds and flu need to go from green to orange, as we are in the height of the winter season. The 17 pills he takes, now number 22 and a half. The helicopter landed four times during clinic and three of Evan’s compatriots were admitted, from Clinic, for RSV, yesterday alone. Can anyone say, “Wash your hands?”

Cancer remains the great leveler, for me anyway. I thought I was having a hard day yesterday, with the wait times, which were threefold what we normally experience, until I realized that Evan had been triaged to the back of the line, due to the extra admissions. Some days you can just “tell” that things aren't going well on the ward, by the way the staff answers your greeting.

Mid day, I felt my sense of impatience and anger fade away, even when they “lost” his chart and the longer than normal lines just didn’t move. After awhile, you get back into hospital time and walk in the “right” direction around the circle. After awhile you remember what the definition of hope is, from the perspective of a child fighting cancer.

Quite frankly, I spent the rest of the day, fighting back tears and regaining the air from my stomach and thinking about "hope". MLK on the many televisions over the beds, resoundingly forced me to, while not remember, at least hear, that the “only thing we have to fear, is fear itself”, but it did little to answer my son’s questions or quench my thirst and hope for a better tomorrow.

The positive mood across the country today as President Obama is sworn in to office and we, as a country, face troubles unforeseen for many years, did little to raise my spirits and give me hope in a new tomorrow. Yep, cancer took a part of that new dawn feeling away too. Do you know how much I wish cancer could just take a backseat and walk at the end of the line?

As the newscasters hashed and rehashed the significance of yesterday and the dawn of a new beginning today and all the hope that today holds for tomorrow, somehow, this festivity did nothing to help me with being a mom to a very young little boy, on a cancer ward. The din of the broadcasters and the politicians seemed to fade to black, when I heard my son say to his physician:

“What? Are you telling me I am going to die?”

Ughhhh. I knew the question was coming. It was bound to happen. Evan has been a very sick little guy for two years now (not that I needed reminding). It stands to reason, almost, that during that time, his mind has grown, along with his shoe size. I can only hope and pray that what he was told was what he was looking for, what he needed to hear. Talk about an impromptu speech on “hope”.

Juxtaposition this question with his statements on the way to clinic, when his little voice came from the backseat and said: “Ya know Mom, I kinda like having cancer.” He said that he was meeting people he never would have met and he was going to places he never would have seen and, most importantly, feeling things he never would have felt, any other way. He said the ‘people part’ was the best part and the ‘getting over the pain’ part, a close second. Is this what it means to a boy of nine, to "hope"?

On the way home from Clinic, Evan wasn’t as much in the mood to “like cancer” and he wasn't feeling very hopeful. This disease IS the great leveler, isn’t it? Man, I hate, hate, and triple hate these sucker punches to the gut. I can take it…but, just, leave my kid alone. I want my son to feel the hope each new day brings.

On the way home from Clinic, Evan had much less to say. On the ride home, Evan just listened to me and tried to look out the car window, through tear stained eyes.

I told Evan what I believed.

I hope that what I said to my son was the right thing to say; I hope that what I said was enough to give him hope.

xoxo,
mom

  46 A DAY

 

I know that my last post was really sad. I appreciate your comments and emails about these children and how moved you were by their journeys. I did some mental math and I realized that two little boys, with a combined age of seven, (not counting Evan's nine), have reached and touched and moved about a million or so people, in countless countries. Sad to say, the story of these precious children does not end there-not by a long shot. Every day, there are 46 more children diagnosed with cancer. Every stinkin’ day. I can’t sit back, especially when Evan is doing some better, even for a moment and let this issue stand by the wayside. These are real children, with lives cut short and hearts hurting everywhere. Thank you for walking a whole mile in my mocassins last week.

There is a certain blessing and sense of belonging amidst the frightening statistics and stories. Receiving a diagnosis of cancer is often likened to a classroom of children who must report to the center of the room, and with no foresight, no warning, pick a stick from the “jar”. The child who draws the shortest stick receives the diagnosis. Even if your child doesn’t draw the short end of the stick, at random, the fact remains that everywhere, every year, these children have to take a turn again, and redraw a stick. Each and every year. Evan even gets to draw again,too. Every single day, 46 children draw the short end of the stick.

Thank goodness those of us who parent these children have a somewhat safe haven- somewhere we can go, all the many of us with children who for no real good reason, drew the short end of the stick. We are members of a club no one wants to join. And, once a member, always a member. But…there is a ray of sunshine for us…there is always hope, until, of course, there isn’t. The picture of lost hope, of a family shred by the heartstrings and minus one, is heartwrentching, but, the power of the parents and siblings that remain, sustain us all while we are still in the trenches.

Evan’s diagnosis gave us a cause circumstance to join a powerful, supportive network of families with children fighting cancer, among other horrific disease processes. The Carepage Family. Carepages offer to us, instant ready made friends,friends who have no need to explain, who can complain and who can discuss and who “know” even when we would rather not know. Our numbers grow daily and we welcome one and all supporters. I follow many children, as does Evan. We fall in love with families and children all the time and we find a common bond that is never broken and leverages the bad, with the good, all the time.

Many times, I spare you the details of our life behind the safety of the walls of Carepages. Believe it or not, I left whole pages out of last week’s post. Some times I write two posts…one with the highlights, which you usually read and one post for later, in bound version, that spares no expense and is in great detail… Cancer and the impact it has on the child, the affected, the family and friends and the caregicvers who rally round the patient is not easy and it is not something I can bear to write about in public just yet, much less ask you to read, but my process is always blessed, by the many of you who support Evan and the Carepage community wherein he resides.

I have an analogy. Hang with me a minute on this idea, because I think it explains with a little bit of clarity what life is like out here in the vast wasteland called cancer.

I fashion Evan and I as an old, sturdy, white, not self defrosting, rounded antique Fridgedaire, with the logo on the front in silver and cursive. Remember those beasts? Sometimes, I wish I could be the top of the line, latest and greatest french style stainless steel model, with an extra large freezer below the fridge, but that is not to be. So, I go along, using my old and trusty fridge, faithfully and often. It is messy and noisy and unpredictable and costs a fortune to run, but it runs. I would take the clang of its coils in the room over silence anyday.

 

I use the freezer in my old Fridge… a lot. I put all sorts of bagged and wrapped memories in there, for any number of reasons. Many of the details, while not shared on these posts are frozen in time in my freezer. They aren’t going anywhere and unfortunately there are no expiration dates for the memories. I put them in there, perhaps to avoid a thaw and a meltdown…perhaps to save for later. But. Every once in awhile I open the freezer and I take out a package, like I set out to do last week when I was discussing Evan’s day of diagnosis and how hard a simple thing like seeing a store sometimes is for me. But when I opened that darn freezer, a lot more than I was intending to share toppled out, onto the floor, for all to see. When I even dare to open that freezer, if I am not quick and very careful,many more frozen in time moments spill out onto the floor- many more frozen items spill out than the one I am searching for. When that happens, you get a post like last week.

 My freezer is packed, let me tell you. There are packages in there some 18 months old, wrapped in hospital blankets. There are baggies pressed out of air, holding the leftovers from many days of bad news. When I open the freezer I see pressed roses and handprints made from paint, but I aslo see whoel packages of stress, pain and it is not pretty. It took me a long while to gather up the remnants of the frozen items that spilled out and hurt me when they hit my toes, and yours, if you read to the end of last week’s post. I am still gathering up fragments of heartache…left out on the counter too long.

A lot of times, I just open the cool bottom door of the fridge and “look” for something to write about. I don’t do this because I lack for things to say about Evan’s journey. It’s just that sometimes I wish to share the freshest news, like the markets special on strawberries this week. Other times I want to look further back and fix for you a “mommy sandwich”, as Evan calls them, with lots of fresh meats, lettuce, tomatoes, onions-the works…and that is when you get a BIG post, with hefty portions of details, emotions and grit. Sometimes I only have left in me a snack, just a nibble on a bite of his journey to share with you. Other times, I feel like I can give you the whole enchalada, if you read here and visit the webpage. It houses along lots of magnets holding precious photographs on the fridge that is his blog.

I bet you wonder why I don’t clean house, and throw out a few of the leftovers. Simple answer: Would you throw away one single drawing, one painted car, one messed up holiday paper wrapping with your child’s hands in paint, if, if, if, you had the diagnosis Evan has had? I have lots of memories with my sweet little boy, but not near enough, and they are all too special to throw away. I can honestly say that I cherish every second of every day with my sons.

Last week, I did something that our kids do…I held the fridge door open- waaaaaay too long, peering at the items inside. What happened was that you got a big ole longer and more detailed look inside a wide open fridge door, at life as we know it, every single day. I have no doubt that many of you wanted to shut that door, right away. I am sure some of you did just that. I hope not, but sometimes it really is all just too much, now isn’t it?
After reading a post like last week, I wish I could say that things are better this week, and that I have shut the door,but that’s just not the case, as much as I want it to be. 46 a day. Everyday. Classrooms of children and their families hear the words, “your child has cancer”. It does not get better, even as one or more of our cp children have a good week or weeks…there are those we see and hear from each day that go down, and some, way too many, who do not get back up, here on this planet we call home, anyway.

Why do I tell you all of this? What can you do, you ask. I tell you about my son and his battle and about our life because to raise awareness,to touch lives, is the first step on a journey of a thousand steps. The cure must be had and this is a journey our country owes to these precious children. If I can impact just one of you to look with me in the freezer and the fridge, to do more, to help me fashion a feast out of leftovers, then Evan’s journey, while often unbearably hard, is not in vain. Our children do not have the voice they need to have, and it is up to us, as parents and concerned readers to speak for them, and because of them and demand the cure. 46 a day. 46 families hear the words, each and every day of each and every year.

So,what can you do?

Pray. Always pray.

Dare to keep looking in the fridge with me.

Support Evan with waves of your finest encouragement and friendship and know that it truly makes the difference.

Donate blood and platelets. It IS the gift of life.

Visit the Petition Site and sign the Childhood Cancer Petition!

Visit Childhood Cancer and raise awareness!

Sign in to Carepages, again and again and again…even if you don’t like what we’re having for dinner. 46 a day. That is 46 too many. Each and every day. Ok. I’m off my soapbox.Thank you for reading and allowing me to acknowledge the countless children we see every week who need our help. Thank you for honoring those who struggle and who have left us way too soon.

Evan continues to do great this month. I know what that means…he’s bound for an increase in doseage levels. He was ‘threatened” with it last month, but I was so worried about him then, with his lack of energy and spirits, and because he shot so low on counts, mid month, that the doctor decided to wait to increase his meds. There is no rhyme or reason for his decline last month and/or for his uprise this month, but I am thankful things are on the upswing.

Evan flew a kite the other day. Doesn’t seem newsworthy, until you realize that he hasn’t been in a park for 17 months. Do you know how blessed I felt just seeing him run, and fall on the grass, face first? Nevermind we had gusts of wind in the 60mph range, and the kite never really took off. Remember him telling us,”…for it is in flying that I am free?” God Bless the child that runs in the park again, after so long. God Bless the child that is free.

Clinic is next week and we are bringing a few of Evan’s biggest fans. Anything we can do to change up a looooong day and cause a bit of fun is welcome. Pics next post. Next week, Evan will have a Lumbar Puncture in the Outpatient Surgery Center and then proceed to Day Hospital for IV chemo/pentamidine, and then it’s off to Med Clinic Oncology/Hematology for a visit with his doctor. I have a list of questions, about supplements, symptoms and side effects and especially about the recent reports all over the web of a subtype of high risk acute lymphoblastic leukemia that has been identified as more prone to relapse. I want to ascertain if Evan falls in this category. Well, actually, I don’t want to ask, as you might imagine, but forewarned is forearmed and in this war, every bit of knowledge is crucial. I am hoping Evan doesn’t have the DNA marker that is identified.

Ryan has a cold and straight A's again. Not a big deal, well, in a guy so big I guess a cold is a “big” deal, and I know the A's are HUGE! But,in our home, something as simple as a cold is tatamount to CA high wind warnings, low humidity levels and the ensuing firestorm watch. Maybe we can all hope and pray the only thing that comes of this development is that Evan gets to finally fly his kite in the winds and weather full of warnings.

Now go- create a memory with someone you love and then stuff it in your freezer, to cherish for all time.

xoxo,

mom

In Memoriam

I have had a post prepared for days but then, things changed. Evan is doing so much better this month and therefore I have had some time to pick up the million pieces of my heart that shatter each time his spirits sink doing battle. And, then, things changed…again, like they are prone to do, and, the heart, it knows, and it remembers, and it breaks again, all over again. When will things really change for the better and when will this war end for our children?

I had planned to share with you the beginnings of Evan’s diagnosis and how things continue to change for us-- with every stoplight into a certain business, the memory of it all comes crashing back again...his pain and the diagnosis. I had words written about the closing of the storefront where his body lay on the floor in pain and however much I hoped the store closing would erase the memory of that fateful day, I had only hope and every reason to believe a closing shutter wouldn’t take away the memory. It takes a thousand “attaboys” to erase one painful memory.

In the world of cancer, the monster is real and he can kill you. Day after day we hope for a cure and we press on. Week after week, hopes are dashed, only to be rebuilt. Today’s’ post is not for the faint or for those of you who privately tell me “this is all too sad.” This is your cue. For the rest of you who trudge this path with us, week after grueling week, this is a three Kleenex moment and one that dare I say, truly impacts greatly. Although the feelings may be painful, they are beautiful sentiments that, in an odd twist “…we must embrace… for to hold what is not here is to truly experience what is here.” T. Dumm

Words don’t come for me this week to relate to you or share with you a glimpse into our world. I therefore offer notes from my Inbox. There are those this week who have said it better, even as it should never, ever, have to be said. The world has lost greatly and been forever changed...again and importantly. Rest in peace, Coleman and Dante and Diego and soar, like on wings of eagles. Heaven is a better place and we are better persons for having shared your journey. No more pokes, no more chemo and sweet, Dante, you need never fear the dark again... Little ones who have earned their angel wings leaving behind family wishing for one more…kiss, smile, touch, moment.. Gone way too soon, these little lights extinguished.

Our deepest sympathy to Caden, Coleman’s twin brother, left to find his way in this world without his brother and to the families of these precious children and, yes, to all who fight and who ask questions about the death of their friends. Please remember these children in your prayers, and pray this week especially for Buddy and Zachary, who could use a few extra amens.

From Dante’s Dad:

As usual he chose his own time, and managed again to do so with a dignity and symbolism all his own. Dante was our Lord of Misrule, who died and shook our entire world - but somehow made it better for having been in it. I don't know how the weather is where you are reading this, but here at home the sky has been crying since Dante left us. He went with the gentle strength and iron will he has always displayed during his journey.

I recall the room getting brighter; I must have opened my eyes wide in surprise and looked to his nurse then to Dante pointedly. There was time for Jo to put everything down and climb up onto Dante's bed. She held his right hand in her left, and I held his left sitting in a chair by his bedside. I rested my left hand on Jo's leg, completing our little circle. He took three, maybe 4, more breaths and then simply stopped. There was no struggle, no distress, and no pain.

I was so proud of him and grateful for how he faced the end. There were so many ways it could have been much worse. The ladies from Child Life came to do impressions of Dante's hand, handprints in paint, and thumbprints in ink. We washed and dressed him in a long-sleeved onesie, Thomas pajama pants, and car socks. We got to hold him for the last time and remind him of things he had been told a million times, but never enough.

My hardest moment was holding him, cradling his head on my shoulder and showing him for the last time the paintings I had made for him, telling him "Daddy loves Dante," and knowing that he couldn't answer me. It was nearly 3pm by the time the undertaker came to pick Dante up. I gathered him up and arranged him on the gurney - having been there for his first and final breaths and being the first and last hands to hold him in this world. My boy and my blood, full circle, as it should be. This is not an ending... others are still fighting and Dante's memory will not allow me to forget them.

We left quickly, eager to be "out" and on our way home. The drive home was uneventful, except that I was keenly aware of Dante's empty car seat and took special notice of a passing train - trains will always remind me of Dante, I think. And planes, cars, trucks, bridges, the moon, the streetlamp in front of our house that is also the moon, trees, "mo' tchees"... basically everything visible from a car window.

It was difficult to unlock the door when we got home. Almost like we weren't allowed in without Dante. The house was in good order, trapped in the bubble of time between Thanksgiving and Christmas. I walked into Dante's room, looking over all his favorite toys, readjusted his bed sheets and comforter, and switched off the base unit of his baby monitor. We're upset, but we are so proud of how Dante handled himself, and so happy that the day of his passing was a GOOD day.

I keep thinking of all the things I wanted to share with Dante that I was supposed to teach him and never will be able to. I never got to take him to the beach, to an aquarium, or on a boat. I love the water, and bath time used to be our special time together before he was sick. He used to splash and kick so much that the entire floor and halfway up the walls would be wet. After he got sick and had his central line placed, he didn't like the bath anymore, and I stopped washing him at home. I don't remember alot from before he was sick; it took up our entire lives when we found out last December.

I was supposed to teach him math and how to fish. I will miss chasing him around the house and tickling him, throwing him on the bed into a big pile of pillows in Mommy-Daddy 'oom. I miss cooking dinner while Jo was at work, with Dante watching from his high chair & Avril Lavigne's "Hot" music video on the computer. The closest Dante got to running was when he used to take a few fast, stumbling steps into the living room, then throw himself headfirst over his foam, fold-out sofa onto a pillow. Jo nearly had a heart attack, but I busted a gut laughing at him (and encouraging him).

I always imagined having really engaging conversations with him as he got older and figured things out. I never got to play in the snow with him - we never had any of consequence during his three winters. No snowmen, except what he saw on TV or coloring books. He was never able to appreciate a Broadway show, though he was present for Wicked in-utero. He never got to grill with me and enjoy a good burger or steak. No sandcastles or fishing. Never slept in a tent. Never had the experience of ordering the same Chinese food over and over, because you always "want to try something new, but can't decide" and go back to the same.

Daddy loves Dante... the rest is silence.
1/6/2009 8:33am

From Coleman’s Mom:

Today the world may have cried a river of tears for a little boy’s life that ended way too soon, but we believe Heaven is REJOYCING over Coleman’s job well done. Coleman was an amazing child of God and we were so honored to be chosen as his parents. He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.

A quick story. :)

One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “Mommy? Did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “Well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.

Lots of people have mentioned their anger toward God …how can He let this happen when so many people have been praying for Coleman? Why didn’t he answer our prayers?
I just can’t be angry at Our God who sent Coleman to us in the first place. Coleman was a child of God, WE were chosen to be his parents- and how blessed we were. Maybe my feelings will change, but like Coleman, I can’t imagine being angry at God.

Would we have loved to have had more time with Coleman? YES! I want him back right now, but I know that’s the selfish part of me talking. I know I will hurt more than I can ever imagine in missing him…and I know I will have MANY days of heartache and anger, but my anger is over the fact we live in a world where we can do so much, but still do not have a cure for this horrific disease. Children are paying the price for that. More on that will come.

I guess what I’m saying am I known for a fact, Coleman would NOT want us to be mad at God. He taught us so much in his time here. His lessons will go on for a very long time. He knew where he came from and he knew where he was going. My heart aches for more time, but I’m SO thankful for the time we got with him, and we know we WILL be with him again. God doesn’t always answer our prayers in the way we want him to…HIS ways are not ours, and that’s hard to accept, but true. It doesn’t mean I don’t question it- it’s hard to understand, but one day we WILL know.

Thank you for your support in these changing and trying times and in all the moments in between. As one mom put it this week, having our Carepage family in our corner is like a Verizon commercial. Each time we enter the hospital, we ‘see’ you outside, strong and in our corner and it makes a world of difference.

xoxo,
mom

Let It be Christmas

The Gift Of Love Will Endure

"A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way." Deena Metzger

A Christmas Version of
1 Corinthians 13
Author Unknown
If I decorate my house perfectly with plaid bows, strands of twinkling lights and shiny balls, but do not show love, I'm just another decorator.

If I slave away in the kitchen baking dozens of Christmas cookies, preparing gourmet meals and arranging a beautifully adorned table at mealtime, but do not show love, I'm just another cook.

If I work at the soup kitchens, carol in the nursing homes, and give all that I have to charity, but do not show love, it profits me nothing.
If I trim the tree with shimmering angels and crocheted snowflakes, attend a myriad of holiday parties, and sing in the choir's cantata but do not focus on Christ, I have missed the point.

Love stops the cooking to hug the child. Love sets aside the decorating to kiss. Love is kind, though harried and tired. Love doesn't envy another's home that has coordinated Christmas china and table linens. Love doesn't yell at the kids to get out of the way, but is thankful they are there to be in the way. Love doesn't give only to those who are able to give in return, but rejoices in giving to those who can't.

Love bears all things, believes all things, hopes all things, endures all things. Love never fails. Video games will break, pearl necklaces will be lost, golf clubs will rust,

But…

Giving the gift of love will endure.

My son, changing the world one present at a time, has changed my world forever.

Believe.
.
Always Hope.
.
Love.

Spread Joy.

Have Faith.

Look for Miracles.

Share Smiles.

Give the Gift of Love.

Our sincere thanks to the Los Angeles Sheriff’s Department for making Evan's dream of giving, come true.

xoxo,
mom

Photo and video editing at www.OneTrueMedia.com

Check Out the New Widgets and Muse with Mom

Look to the right and down, and for those of you wanting a new GPS from Santa, that would be southeast? or so...by a degree.

The countdown to the complete and total CURE for Evan and his Christmas Is Coming Video Montage are here for your viewing pleasure.

Check back often! The clock is always ticking! Remember...widget last one and the one before...to the right.

Here's the latest musing from, yours truly,

Season’s Greetings

T’was the night before Christmas…well almost, so this post will be brief and hit the highlights. Evan remains the same, medically, and I am chomping at the bit, and really looking forward to his Oncology visit this week. I so want to ascertain just what can be done to re-energize my bunny.

In the meantime, Christmas is coming and the goose is definitely getting fat. There are already so many special moments to share, long before the stockings are hung by the chimney with care. I have prepared a video montage, because to detail them in any other way at this juncture would cause most of us, myself included, to fall shamelessly and seriously behind , more so than we undoubtedly are already.

I am painstakingly aware that many among my compatriots and cancer fighting families do not have the luxury of long lines and lists, but are instead by bedsides and behind shared curtains. I am sadly all too aware that many we know will spend their first and counting holiday without beloved children, who have passed all too soon. It is with these special friends in mind that I offer my sincere and special prayers, for a peace that surpasses understanding and a hope for a better tomorrow.

My Christmas Is Coming montage is rather lengthy, but it is one you can watch, and share with your family and friends. It can be started and stopped at most any point and with some background, will make perfect sense. The piece will please you when you see how clever we have become at taking full advantage of Evan’s hour of power each day. Santa appeared at just the right time, the house has been decorated bit by bit and lit both inside and out. We have received so many special greetings and visits. And Evan has rested in between and after…so all things are possible, when you Believe!

You will see our Christmas Village in the movie, painstakingly prepared by Evan and his BFF, Micah. Talk about a visual board…I am ready to move to Whoville, that much is certain.

You will meet Rampage, and oh, how I wish you could have heard the maidens serenade Evan tonight. After the singing of carols on the porch and in the street, Evan went to sleep with visions of sugarplums dancing in his curly head. I think he even applied for The Bachelor and told them not to bother with the women…he would bring his own! Thanks for the memories, girls…and the pies…and to each of you a rose and a bid good nite, with love to each of you and the remarkable Rampage organization and Stevens family, for all you continue to do. Bless You!

You will be treated to the “rare” photograph of the eldest. He is a fine, dapper young man, all 6 feet of him, and always makes me exceedingly proud to call him son. Love to you this Holiday season and every second in between, son.

You will see the Twelve Days of Christmas…brought to you by…an unknown party or parties that have taken it upon thems (elves) to come out in the bitter cold and wind and rain each of the last seven nights to fill our home and our hearts with the season’s best. Who needs the USPS when we can get deliveries like this! You have brought days full of joy to our family.

You will notice many, many coins…thirty years of coins to be exact, that were painstakingly counted, sorted, wrapped, and cashed, with love from the homestead in Virginia. This is the other half of the bookend that I call Evan’s coin story and, without these coins, none of this would be possible. Truly, the penny drives at Highlands and my family’s coins are the true picture of baggie after loving baggie of pennies from Heaven! A new true blue, adult size wheelchair…here we come. Just think of the loopy wheelies Evan can do in that carriage!

St. Nicholas will soon be here, but not before Evan takes Les Salay up on his offer to Pay It Forward. In true Scout fashion! I am so proud and pleased to announce, that out on the rooftops, it seems the Los Angeles Sheriff’s Department , Elf Evan and Santa extradorniare have  gotten together and come up with a plan and a sleigh full of packages…to bring all manner and method of good cheer to so many who need it most…

Listen closely, and you just might hear the pitter patter of tiny Elf Evan footsteps, entering CHLA next week, with a wheelchair sleigh packed chockFULL of gifts …for Evan’s friends. God love this child of mine. I will definitely be covering this story in full detail later. And yes, I am the tiny reindeer with the red nose, which gets to lead the clatter and the sleigh.

Thank you to the anonymous donor of the Target gift card. I DO know…there are so many who pray, and unceasingly support our warrior. On this holiday, and every day in between, you-each of you- have my humble and sincere thanks. We offer our praises and we are exceedingly grateful for the support from Highlands, from all the many students and families that have trudged this path with Evan and our family. To each of you, who RAMPAGE against this thing we call Leukemia, thank you for the giving and the prayers and the constant support. I hope that each time that you see Evan you will see your strength in him. It shows!

I will update after our Hospital Visit. Enjoy the movie...right and down ...remember?

 

xoxo,

mom