August 11, 2008

CAN I HAVE KETCHUP WITH THAT?

Surgeryjpeg

Surgery is complete. Evan is recovering. I got to watch Evan get put to sleep, which was a first for me. I also got to feel the fear that comes from being told the surgery will be over in 20 minutes and, an hour later, still not hear anything. (Details available upon request.)

Yes, Parker, we now have his line, and a few other, uh, shall we say, ‘attachments’. Right now Evan doesn’t feel so hot and he doesn’t even want to think about today. I don’t blame him.

The surgeon told him, in a morphine stupor- so he may not even remember- that while he didn’t get the “gold”, he set a “house record” for level of difficulty.

When Evan starts feeling better, I have some good news for him. He gets to put ketchup… on his ketchup. Sugars are normal today. Thanks for all the prayers. xoxo mom

Surgery2jpeg

August 09, 2008

GO TEAM USA

I Can't Sugarcoat This

Walk808 Evan put on his Nike "Fearless Warrior" sneakers yesterday and allowed the expert PICC/IV surgical team to attempt one more removal of his line, without anesthesia.

It didn't work.

All week long, there were road blocks to the resolution of his line problems...insurance, OR schedules, radiology conflicts, procedure re-codes, case managers with the day off, shift changes, preop exams, new labs, those who wished to give it the ole college try, etc....There was the slightest chance that his line could have migrated down, by itself, during this interminable wait, so Evan agreed, under stringent conditions, to a retry, before a dressing change and a weekend wait.

The good news is that Evan is not going to be subjected to a retry. The better news is that he is the first surgical case, Monday morning.808wheelchair

Maybe.

Labs revealed a new problem. His glucose levels (blood sugar) have risen from a normal of 76 on Monday to a level of 376 on Friday. That's an impressive jump. Steroids have been discontinued. He is being watched.

His clotting factors, not insignificant, given the nature of the impending procedure, are not in line with normal parameters either. I am going to attempt to mentally prepare my son for the procedure, but I think it prudent to cloak my words with prepositional phrases. I am running out of platitudes and I can't sugar coat my words right now. Evan has been instructed to avoid any and all sugar- for the weekend.

Conjecture is that "stress" might be a factor for these blood levels. I'll go with that. More next week. Enjoy these last few days of summer. Please keep Evan in your thoughts. xoxo mom

808_2

August 06, 2008

MIRACLE TREAT DAY

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On August 7th, 2008, Dairy Queen® and Blizzard® treat lovers across North America will make miracles happen for sick and injured kids in their communities. Proceeds from Blizzard treats purchased at participating DQ stores are donated to local Children's Miracle Network hospitals. Thank you for helping to make miracles happen, one Blizzard treat at a time.

The DQ & Children's Miracle Network Story

No question about it, kids love Dairy Queen and DQ loves kids. That's why, since 1984, Children's Miracle Network has been our charity of choice. In that time we've raised over $70 million for Children's Miracle Network hospitals, touching the lives of millions of sick and injured kids across North America. All funds raised by DQ store locations stay in the local community and benefit children treated at your Children's Miracle Network hospital.

Kids About Children's Miracle Network

Children's Miracle Network is a non-profit organization dedicated to saving and improving the lives of children by raising funds for children's hospitals across North America. Each year the 170 Children's Miracle Network hospitals provide the finest medical care, life-saving research, and preventative education to help millions of kids overcome diseases and injuries of every kind.

For more information, visit www.childrensmiraclenetwork.org.

In Canada, visit www.childrensmiraclenetwork.ca.

August 05, 2008

BLOOD, SWEAT, TEARS And SURGERY

Tear_jpeg

Yesterday was Clinic and a no good, horrible, very, very bad day, to use my son's words. Evan was scheduled for an LP and spinal and IV chemo. He was invited to do the LP or spinal tap, without sedation, without the OR, without "loopy" medicine. Tough it out...true grit style.
Evan accepted the challenge and aside from the seven and a half minutes of the actual procedure feeling to him like a lifetime, not to mention the complete depletion of his emotional stress reserves, and the additional ten hours in an Urgent Care hospital bed, he did fine.
His spinal fluids were reported as clear some hours later...no relapse. Praise! What a strong, brave boy! I was so proud of him, albiet, exhausted myself.
The procedure took absolutely everything he had inside his brave soul and it tore at my own heart as well. No one should...well, you know where I am going.
Unfortunately, while held captive, the doctor decided that perhaps Evan had the wherewithal, physical stamina and emotional fortitude to remove his PICC/IV line, again without anesthesia, on the same day! OK, that's alot to swallow in one day, for even the strongest of us. Evan accepted the challenge. You see, after a time, the huge and significant risks of keeping the same IV line and the possible complications outweigh the benefits of no pokes and you come to a juncture in treatment where it is safer to be poked and have IVs for all necessary treatment.
Urgent_jpeg There was alot to the decision, but it was finally agreed his line would be removed, again, with no anesthesia! It all proved to be just about too much for our little warrior man. I had him primed and focused and enthusiastic, but, there were complications. Statistically speaking, 399 of 400 children have a line removed with no problems. Guess what number Evan got? Yep... 400.
Ten hours and buckets of blood, sweat and tears later, we came home to await the scheduling of surgery this week to remove the remaining 15 centimeters of line that remains. I won't go into the details...most people I know have turned "green" just thinking about what is involved.
The surgery will be vascular in nature and involve flouroscopes, radiation, a surgeon and a radiologist and yes, anesthesia, and hopefully, no more pain. Yesterday was alot of pain. Children and off the charts pain...the combination brings me such sadness.
I also haven't figured out how I am going to work with a child on steroids, "roid" rage and hunger nothwithstanding and the 12 hours, plus procedure with no food or drink, once surgery is scheduled this week.
The only way out is through, so we march on. This too shall pass, but until it does, please keep Evan and all the other children who struggle with this beast in your thoughts. It's quite the bump in the road for Evan and so brutally unfair for all who are diagnosed. These children truly suffer. Thanks for checking in on Evan.  For those of us flabergasted at the recent Carepage changes, I will double my posts here and there for a time.
From my vantage point, if the frustration at the new Carepage site confounds you, like it does me, or if our car breaks down, or our heads hurt today, we might give a thousand thoughts and prayers up for these precious children and consider a posture of gratitude, for, in the scheme of things, with all things considered, we probably are having a very good day, indeed.
More, when I know more. Surgery will probably be on Wednesday.
xoxo mom

August 02, 2008

Children's Hospital in Top Ten

U.S. News & World Report Magazine Names Children's Hospital in Top 10

Hospital Ranked Among Top-10 by U.S. News & World ReportEvanandryansummer08_064

CHLA is also ranked among the best in the nation in six specialty areas

Our hospital has been ranked 9th among 143 Children’s hospitals and medical centers in the nation, according to U.S. News & World Report magazine’s “America’s Best Children’s Hospitals” in its June 9, 2008 issue.
 

Childrens Hospital Los Angeles has been ranked among the nation’s best

hospitals since the inception of the magazine’s rankings in 1990.

Specialty Care Rankings

In addition to the top-10 ranking for Childrens Hospital Los Angeles,

six of the specialty areas were rated among the nation’s best:

“While we are pleased that we continue to be recognized as

one of the top pediatric facilities in the United States in this

survey, our priority will continue to be providing the very best

medical and surgical care to the sickest, most seriously ill

children, teaching the next generation of pediatricians,

pediatric surgeons and pediatric nurses and conducting the

research that will lead to new treatments and cures for diseases

and conditions that afflict our children, like cancer, congenital

heart defects, diabetes, sickle cell disease, immune deficiencies, respiratory disorders and more,” shares CEO Richard D. Cordova, FACHE

“We understand the enormous responsibility we have to the children

and families we serve and to children everywhere.”

About the Rankings

U. S. News & World Report invited 143 hospitals to complete its

survey to be considered for ranking.  One hundred and thirteen

chose to do so.  The basis for the rankings is a blend of:

  • Reputation 
  • Outcomes (where available)
  • Care-related measures (e.g., patient volume, nursing and credentialing) 

Reputation
The magazine’s editors surveyed 1,100 pediatricians by mail

and asked them to name up to five centers they believe to be

most successful with difficult cases in their specialty. 

The pediatricians were chosen at random from the

American Board of Medical Specialties’ database –

200 for general pediatrics and 150 for each of the six

specialties.  Depending on the specialty, reputation counted

for 50-60% of the final score.U.

Outcomes
Inpatient death rate was used in heart/heart surgery and in neurology/neurosurgery.  That measure was not used for

specialties that focus on outpatients – cancer, digestive

disorders and respiratory disorders.  The editors said that

measures for neonatal are in progress.  Where available,

outcomes counted for 10% of the score.

Care-RelatedMeasures
The editors used nurse staffing, the availability of important technologies and patient volume.  These measures counted for 40% of the hospital’s score.

How we Rank Among Our Peers

Three other children’s hospitals in California were ranked in

the new survey:

  • Lucile Packard Children’s Hospital at Stanford (12th) 
  • Mattel Children’s Hospital at UCLA (16th) 
  • University of California, San Francisco Children’s Hospital (20th) 

Complete Rankings of hospitals and specialties
Read More about Our Reputation and Recognition

More Press Releases
Contact Our Media Relations Representative

4650 Sunset Blvd Los Angeles, CA 90027

July 30, 2008

THIS GAS IS FREE!

Evanandryansummer08_251

From the book: The Energy Bus, by John Gordon.


10 Rules For The Ride Of Your Life


1.  You're the driver of your bus.
2.   Desire, vision, and focus move your bus in the right direction.
3.   Fuel your ride with positive energy.
4.   Invite people on your bus, and share your vision for the road ahead.
5.   Don't waste energy on those who don't get on your bus.
6.   Post a sign that says NO ENERGY VAMPIRES ALLOWED on your bus.
7.   Enthusiasm attracts passengers and energizes them. 

8.   Love your passengers.
9.   Drive with purpose.
10. Have fun and enjoy the ride.
Evanandryansummer08_260

July 29, 2008

Words of Encouragement

Pryce200 Girls battling cancer declare visit with Bush 'cool'
Local pair see Oval Office signing of Pryce's bill
Tuesday,  July 29, 2008 8:34 PM
THE COLUMBUS DISPATCH
Ron Edmonds | AP
President Bush smiles at 8-year-old Eden Adams of New Albany in the Oval Office of the White House today after signing the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. On the desk is a photo of Caroline.
Tim Revell | Dispatch
Legislators named the bill for Caroline Pryce Walker, shown here with her mother, U.S. Rep. Deborah Pryce, at home in Columbus in 1998.C_pryce_200

WASHINGTON — They're in a tough fight with a vicious disease, but two girls from central Ohio emerged from the Oval Office and walked out of the White House onto the driveway yesterday with wide grins, official pins and presidential words of encouragement.

Hannah Lewis, 7, of Reynoldsburg, and Eden Adams, 8, of New Albany, who became friends as they underwent cancer treatment at Nationwide Children's Hospital in Columbus, were among those on hand to watch President Bush sign a pediatric-cancer bill into law.

The Caroline Pryce Walker Conquer Childhood Cancer Act was crafted by Rep. Deborah Pryce, R-Upper Arlington, and named by lawmakers after her daughter, who died in 1999 at age 9 after battling neuroblastoma.

Both Hannah and Eden used the same word to describe meeting the president and first lady and being given presents and a tour of the Oval Office: Cool.

The signing ceremony was not open to the news media aside from still photographers, but Hannah's mother, Jessica Lewis, said Bush told the families that he knew “we were going through a tough time and wished us the best.”

Jessica Lewis and Eden's father, Rourke Adams, said they hope the next step this year will be for Congress to approve spending the first $30million installment of what the law calls for: $150 million over five years for such initiatives as expanded pediatric-cancer research and a national childhood-cancer database.

The single parents saw their friendship formed at the children's hospital — which paid for the families to attend the ceremony — blossom into a relationship.

“This is something we deal with every day,” Rourke Adams said about having a child who is battling cancer. Adams said it is his hope that a fully funded cancer database will give researchers more information about why children develop cancer.

After the signing ceremony, Pryce said she was delighted to see her legislation enacted.

The president and first lady spent a lot of time with the children and families, including Hannah's 5-year-old brother, Duncan, and Eden's 14-year-old brother, Riley, Pryce said.

As a child in 1953, Bush lost his 3-year-old sister, Robin, to leukemia, and the president told Pryce he was looking forward to telling his parents that he got to sign the pediatric-cancer bill into law, she added.

“This is a great step forward,” Pryce said. “We have been waiting for this day for years now.”

jriskind@dispatch.com

July 24, 2008

Capturing the Nanosecond:Tattoos, Trash and Rose Colored Glasses

"Evan, can you take out the trash?"

                              Chores

                                 Can you guess what happened next?

Are you in the market for a tattoo?

Check this out...

Band

                                          OUCH!

Remember to bloom where you are planted...

             Chla_4 

                                  Hotel California

Look at the world through rose colored glasses,

if that's all you can do...

Rose_colored_glasses

        Make it a great day!

Evan the Warrior T-Shirts and wristbands are still available.

Contact Evan at evanthewarrior@sbcglobal.net to get yours now.

July 22, 2008

He's My Son

Evanandryansummer08_225_3   Evan had Clinic yesterday. He has reached a rather monumental summit. Evan is now, finally, receiving 100% of the theraputic doses of one of his Maintenance drugs. What a climb this "less intense" Phase has been for my small boy! What a sought after, hard fought, milestone marker. He obviously has so very much more to do, to scale the next peak on the next mountaintop, and, the three (3)hills after that, but we pause today for a moment to celebrate his incredible journey. Evan must thereafter sustain his counts and continue climbing, increasing, for a very long time to come. But, glory and celebration is the word of the day for Evan's perseverance and for slowly and steadily climbing to the top of this, his personal first, maintenance peak. Three more peaks on this leg of the trip before he calls it a day and sets up camp on the highest top.

It goes without saying, perhaps, that this has been and continues to be a very tough climb. Oh, the stories I could share. Many of you have held the lines with me as Evan has, bit by bit, inch by inch, percentage by small percentage, made his journey. Some of you may feel absolutely inundated- TMI- (too much information) as the kids might say- much is offered, many times. It’s all so hard to read, isn’t it? Others of you might not wish to read about other children going down this road we are traveling. But those of us in the hallways, outside of our children’s doors, agree that to ‘not’ speak of the other precious children who mightily struggle, some more than others, would be to omit a huge part of our landscape.

Jordynand_sis I have a couple of children on my mind today. Please pray for Evan’s comrades. They are very, very sick right now and they are well… just like Evan… someone’s small, small child- Evan's compatriots, fighting cancer, every single minute of every single day.
Please pray for Coleman, Peyton, Kayla, Jordan and Jack today, as they are definitely under heavy, life threatening fire. Image002
If Evan were in just one of the bunkers that they currently occupy, as he has been and certainly could be again, I know that I would gratefully accept a flood of prayers.
A picture is worth a thousand words, so I will sign off for now. I leave you with a Image003riveting Youtube from a fellow mom, and the song that has lately soothed the hearts of the Moms that I know with balm, as we care for our precious babies...all the small children who climb and fight so hard to win.

Thanks so much for checking in and for all the Amens. XOXO mom

July 21, 2008

God Likes to Go Off Road

Of50325442_2Commentator and broadcaster Tony Snow announced to the country in 2005 that he had colon cancer.

Following surgery and chemotherapy, Snow joined the Bush Administration in April, 2006 as Press Secretary.

Unfortunately, on March 23, 2007, Snow, 51, a husband and father of three, announced the cancer had recurred, with tumors found in his abdomen, leading to surgery in April of that year, followed by more chemotherapy.

Snow went back to work in the White House Briefing Room on May 30, but soon resigned, 'for economic reasons,' and to pursue 'other interests.'  Tony Snow died on July 12,2008. 

Here is Tony's testimony. While I don't usually post articles with such personal convictions, today, I am struck by the magnitude of the task cancer can create ...especially for a child.

                  

Blessings arrive in unexpected packages, in my case, cancer. Those of us with potentially fatal diseases - and there are millions in America today -find ourselves in the odd position of coping with our mortality while trying to fathom God's will.  Although it would be the height of  presumption to declare with confidence  'What It All Means' . Scripture provides powerful hints and consolations. 

The first is that we shouldn't spend too much time trying to answer the 'why' questions: Why me? Why must people suffer? Why can't someone else get sick? We can't answer such things, and the questions themselves often are designed more to express our anguish than to solicit an answer. 

I don't know why I have cancer, and I don't much care. It is what it is, a plain and indisputable fact. Yet even while staring into a mirror darkly, great and stunning truths begin to take shape. Our maladies define a central feature of our existence: We are fallen. We are imperfect. Our bodies give out. 

But despite this, or because of it, God offers the possibility of salvation and grace. We don't know how the narrative of our lives will end, but we get to choose how to use the interval between now and the moment we meet our Creator face-to-face. 

Second, we need to get past the anxiety. The mere thought of dying
 can send adrenaline flooding through your system. A dizzy, unfocused panic seizes you. Your heart thumps; your head swims. You think of nothingness and swoon. You fear partings; you worry about the impact on family and friends. You fidget and get nowhere. 

To regain footing, remember that we were born not into death, but into life, and that the journey continues after we have finished our days on this earth. We accept this on faith, but that faith is nourished by a conviction that stirs even within many non-believing hearts... an intuition that the gift of life, once given, cannot be taken away. Those who have been stricken enjoy the special privilege of being able to fight with their might, main, and faith to live fully, richly, exuberantly - no matter how their days may be numbered. 

Third, we can open our eyes and hearts. God relishes surprise. We want lives of simple, predictable ease,-smooth, even trails as far as the eye can see.... but God likes to go off-road. He provokes us with twists and turns.  He places us in predicaments that seem to defy our endurance and
comprehension - and yet don't. By His love and grace, we persevere. The challenges that make our hearts leap and stomachs churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise. 

'You Have Been Called'. Picture yourself in a hospital bed. The fog of anesthesia has begun to wear away. A doctor stands at your feet, a loved one holds your hand at the side. 'It's cancer,' the healer announces. 

The natural reaction is to turn to God and ask him to serve as a cosmic Santa. 'Dear God, make it all go away. Make everything simpler.' But another voice whispers: 'You have been called.' Your quandary has drawn you closer to God, closer to those you love, closer to the issues that matter... and has dragged into insignificance the banal concerns that occupy our 'normal time.' 

There's another kind of response, although usually short-lived an inexplicable shudder of excitement, as if a clarifying moment of calamity has swept away everything trivial and tiny, and placed before us the challenge of important questions. 

The moment you enter the Valley of the Shadow of Death, things change. You discover that Christianity is not something doughy, passive, pious, and soft. Faith may be the substance of things hoped for, the evidence of things not seen. But it also draws you into a world shorn of fearful caution. The life of belief teems with thrills, boldness, danger, shocks, reversals, triumphs, and epiphanies. Think of Paul, traipsing through the known world and contemplating trips to what must have seemed the antipodes ( Spain ), shaking the dust from his sandals, worrying not about the morrow, but only
about the moment. 

There's nothing wilder than a life of humble virtue, for it is through selflessness and service that God wrings from our bodies and spirits the most we ever could give, the most we ever could offer, and the most we ever could do. 

Finally, we can let love change everything. When Jesus was faced with the prospect of crucifixion, he grieved not for himself, but for us. He cried for Jerusalem before entering the holy city. From the Cross, he took on the cumulative burden of human sin and weakness, and begged for forgiveness on our behalf. 

We get repeated chances to learn that life is not about us, that we acquire purpose and satisfaction by sharing in God's love for others. Sickness gets us part way there. It reminds us of our limitations and dependence. But it also gives us a chance to serve the healthy. A minister friend of mine observes that people suffering grave afflictions often acquire the faith of two people, while loved ones accept the burden of two peoples' worries and fears. 

'Learning How to Live'. Most of us have watched friends as they drifted toward God's arms, not with resignation, but with peace and hope. In so doing, they have taught us not how to die, but how to live. They have emulated Christ by transmitting the power and authority of love. 

I sat by my best friend's bedside a few years ago as a wasting cancer took him away. He kept at his table a worn Bible and a 1928 edition of the Book of Common Prayer. A shattering grief disabled his family, many of his old friends, and at least one priest. Here was an humble and very good guy, someone who apologized when he winced with pain because he thought it made his guest uncomfortable. He retained his equanimity and good humor literally until his last conscious moment. 'I'm going to try to beat [this cancer],' he told me several months before he died. 'But if I don't, I'll see you on the other side.' 

His gift was to remind everyone around him that even though God doesn't promise us tomorrow, he does promise us eternity, filled with life and love we cannot comprehend, -and that one can in the throes of sickness point the rest of us toward timeless truths that will help us weather future storms. 

Through such trials, God bids us to choose: Do we believe, or do we not?  Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don't matter so that we might devote our remaining days to things that do? 

When our faith flags, he throws reminders in our way. Think of the prayer warriors in our midst. They change things, and those of us who have been on the receiving end of their petitions and intercessions know it. It is hard to describe, but there are times when suddenly the hairs on the
 back of your neck stand up, and you feel a surge of the Spirit. Somehow you just know:  Others have chosen, when talking to the Author of all creation, to lift us up, to speak of us! 

This is love of a very special order. But so is the ability to sit back and appreciate the wonder of every created thing. The mere thought of death somehow makes every blessing vivid, every happiness more luminous and intense. We may not know how our contest with sickness will end, but we have felt the ineluctable touch of God. 

What is man that Thou art mindful of him? We don't know much, but we know this: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us who believe, each and every day, lies in the same safe and impregnable place, in the hollow of God's hand.' 

Tony Snow

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