Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Saturday, November 15, 2008

Friends In Need Of Prayer


Adam Balch

Adam Balch is the brother of a boy that goes to school with Steven. Last Valentine's Day Adam's mother shaved Steven's head as part of a fundraiser for the UCLA Neuro-Oncology center in honor of Adam.

After an unspeakable battle with his brain tumor, which left the skull and invaded his face and jaw, Adam passed away on October 4.

Adam was an amazing inspiration to everyone, maintaining his positive and outgoing attitude in the face of unimaginable pain.

The Balch family is in our prayers.


Steven Von Spreckelson and his wife Britney

Steven Von Spreckelson and his family were the very first people I met the morning after we arrived in Memphis in September 2003. Steven V was diagnosed with the same tumor as our Steven 18 months before, when he was a junior in high school.

It just happened that Steven and his family were in Memphis for a followup visit on our first day in the Brain Tumor clinic and a mutual friend set us up.

I was still in a state of shock and it was so encouraging to meet another patient who had completed the treatment that Steven was about to begin and who was doing so well.

Steven V was a source of encouragement to me, he finished high school and attended college and graduated with honors. Early this year he got married.

Last August, two weeks after our Memphis visit, Steven V was in Memphis for his annual followup and the routine MRI found new tumors, believed to be a recurrence of his original tumor, 6 years and 3 months after being cancer free.

So Steven V and his young wife are back and forth between Memphis and his home in Nebraska as he undergoes chemotherapy for the tumors, which are inoperable.


Regina

And lastly, our dear friend Regina. I haven't wanted to write about Regina I think because writing it down makes it seem more real and this is something we hoped never to have to face.

Regina was diagnosed with the exact same tumor as Steven on the opposite side of her brain. They live in Laguna Niguel, about an hour north of us and we were introduced to them by a friend of mine the week we returned from Memphis at the end of Steven's treatment.

They ended up going to Memphis and doing the same treatment that Steven did and Regina was cancer-free for 3 years, but she recurred in June 2007 with over 30 new tumors. She was given 2 months to live.

Two doctors at Children's Hospital Los Angeles put together a custom protocol for Regina and the tumors shrunk. Last January she was cautiously declared to have no evidence of disease.

But last September there were again areas of concern on her MRI and they tried a new chemotherapy regimen.

Regina had another MRI and a week and a half ago I accompanied Regina's mother Diana to talk with the doctor about the MRI results (Regina's dad was in China on business).

The results were not good, there was further growth of the new tumors, indicating that her chemotherapy regimen wasn't working and he didn't really have any new options for her.

Regina looks really well, to see her it would be impossible to tell that she is so seriously ill. But the MRI reveals the monsters growing in her head and the sort of tumor that she and Steven have is very fast-growing.

Sometimes it seems the bad news comes in waves. Please keep our friends in your prayers.

- Kathleen

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Tuesday, September 02, 2008

Stand Up To Pediatric Cancer


Steven is in this video that I found randomly on another site

September is National Childhood Cancer Awareness Month.

During this month, I will be writing on different topics related to my views about cancer and our children and the effects on families.

I'm going to start with Stand Up To Cancer, (SU2C) an initiative of the Entertainment Industry Foundation.

There will be a one-hour TV show / telethon this Friday evening at 8:00 PM that will air simultaneously on all three major TV networks: CBS, NBC, and ABC.

The goal is to raise private monies to be used to accelerate progress against cancer and directly impact patient care.

It's a worthy goal, the budget for cancer research has been cut every single year since 2003, as the rate of cancer increases. Better solutions are needed somehow.

The parents of several children we know with brain tumors sent in their stories and there is a possibility they will be mentioned on the show.

I took a good look at their site and while I like their general approach, I was very disappointed by a complete lack of representation for pediatric cancers, the emphasis for SU2C is adults.

I saw items on pancreatic and prostate and breast and colorectal cancer, all worthy causes, but they are not pediatric cancers.

In terms of numbers, the number one childhood cancer is leukemia. Number two is brain cancer.


SU2C's explanation of where the money goes

Below is SU2C's advisory committee.

Out of their All-Star Gang of 20, there is only one doctor with a pediatric specialty, Dr. Joseph Simone, M.D., who works in the department of pediatric Hematology-Oncology at Shands Cancer Center in Florida.

There is not a single neuro-oncologist or neurologist on board at all.

The treatment of brain cancer presents special challenges for a two main reasons-- one, it's the brain, and you can't just go in and remove the diseased bits without affecting some vital function, like maybe speech or vision or breathing. The second reason is that the brain protects itself from nasty chemicals and other things via a membrane called the blood-brain barrier (BBB).

Usually this is a good thing, but one consequence of the BBB is that it prevents chemotherapy drugs from reaching their target. One result of this is that when chemotherapy is given, it requires much higher doses to target tumors in the brain than elsewhere in the body.

What's really needed here are some completely novel approaches and out-of-the-box thinking.

Pharmaceutical companies are in business to make money, and they've hit it really big with drugs that lots of people use, like Viagra and high blood pressure medications and proton pump inhibitors like Nexium "the little purple pill" and asthma medications.

But if they were to come up with a really good drug that worked for brain cancer and nothing else, there's just not a lot of folks who are in the market, and so many of those that are there just keep dying. And the insurance companies don't want to pay for those great new medications like Avastin because they are expensive.

For the most part, brain cancers are equal opportunity killers, they don't ask for ID before they set up residence in a child's or a baby's brain.

But there are hosts of childhood brain tumors that don't occur in adults except very rarely. Brain cancers love young brains.

Kids don't pay taxes and they don't vote, and half the time their harried parents are too busy with the business of saving their child's life, their marriage and their own sanity to have time to read the papers or go the polls or write letters to their congressperson.

With very few exceptions, pharmaceutical companies test their drugs on adults before they test children, so it can be 2 years before a drug being used in adults is available for children.

From the SU2C's Where The Money Goes page, it says they will form "Dream Teams" to support the "required focused, intense, goal-directed, team-oriented attack on the cancer problem".

The focus of the Dream Teams is short-term patient benefit.

A worthy goal, but it seems nothing in pediatric brain tumor research is short term.

We'll be watching. I wish I wasn't so cynical and I hope I've got them wrong, but I am so disappointed to see kids unrepresented in such a major undertaking.

I hope they don't put our kids faces on the screen to sell cures for adults.

As for good organizations that target kids with brain tumors and other life-threatening illnesses, I suggest these:

SU2C, I applaud your efforts and your ability to command three major networks, but please don't forget our kids. Our kids need help, and this is their month. Prove me wrong.

- Kathleen

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Sunday, June 24, 2007

Our Friend Regina

Steven and Regina in Memphis, November 2004

Regina is the little girl that lives near us in California that we met the week we got back from Memphis at the end of Steven's treatment in 2004. She has the same kind of tumor as Steven and a friend of mine put me in contact with her family to offer support.

Regina did the same exact same treatment at St. Jude that Steven did, same doctor, same everything. She was four when she was diagnosed in May 2004, she celebrated her fifth birthday in the hospital as she was starting chemo. She finished treatment in January 2005, and like Steven, she's done very well since.

Regina celebrated her sixth birthday at Chili's for their St. Jude fundraiser

Her last visit to St. Jude was in January, her scans were clean and she "graduated" to six-month followup visits just like Steven. She finished first grade the same week that Steven graduated.

Last Thursday after a bout of vomiting, her mother took her to the emergency room and they did a CT scan which revealed massive swelling in her brain. She had surgery on Friday where they removed the largest of what seems to be in excess of thirty tumors.

Regina and Sleeping Beauty

Regina is in the hospital right now recovering from her surgery. I went to visit her yesterday.

Sleeping Beauty paid Regina a visit at the hospital while I was there, I guess even the Disney princesses heard she might need some cheering up.

Nick, Gabriel, Diana and Regina with Sleeping Beauty

Barring a miracle, there is nothing to do at this point except to make her comfortable..

Regina's family are good friends. We are broken over this.

Nobody saw this coming.

- Kathleen

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Wednesday, June 13, 2007

Rayley Our Angel

Rayley Rose Kocurek
May 23, 2006 to June 9, 2007

There is a Reaper, whose name is Death,
And, with his sickle keen,
He reaps the bearded grain at a breath,
And the flowers that grow between.

"Shall I have naught that is fair?" Saith he;
"Having naught but the bearded grain?
Though the breath of these flowers is sweet to me,
I will give them all back again,"

He gazed at the flowers with tearful eye,
He kissed their drooping leaves;
It was for the Lord of Paradise,
He bound them in his sheaves.

"My Lord has need of these flowerets gay,"
The Reaper said, and smiled:
"Dear tokens of the earth are they,
Where he was once a child."

"They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear."

And the mother gave, in tears and pain,
The flowers she most did love:
She knew she should find them all again
In the fields of light above.

O, not in cruelty, not in wrath,
The Reaper came that day;
'Twas an angel visited the green earth,
And took the flowers away.

Our sweet little friend Rayley went to heaven Saturday afternoon at 1:14 pm.

You can light a candle for her here.

- Kathleen

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Monday, April 23, 2007

Rayley Rose

Our little friend Rayley, the baby we met at St. Jude in Memphis when we were there last February when we were there for Steven's last followup visit, got some bad news last Monday.

Rayley was diagnosed with a really terrible sort of brain tumor last August when she was 3 months old.

Despite such a terrible prognosis, she has been doing really well to the amazement of her doctors. The goal was to get her to her first birthday (coming next month) and attempt surgery to remove her tumor, they were also going to ship her out to Houston to do a type of radiation that they currently don't have at St. Jude that does less harm to the brain and is a better choice for a baby.

She had an MRI last week that showed she has two new tumors and she has now been ruled terminal. It seems like a cruel joke, as to see her you couldn't tell that anything is the matter with her, she's crawling and cutting teeth and reaching all those baby milestones.

Going to Houston has been called off and with the new tumors they feel surgery is too risky. They will proceed with radiation at St. Jude most likely hoping to buy her some time.

When we left Memphis in February we left hoping that she'd be there in August when we went back for followup and we are still praying for that.

Rayley's mother Lisa writes:


I have a request for our family. I would like prayers to be lifted to the Heavens from each and every state in this great country.

Many of you have mentioned that prayers are coming from all over the place. I would love for you to post a message on Rayley's site or send me a personal email (lisalkocurek at sbcglobal dot net) with the states that know and pray for Rayley.

50 states and a few other countries must make a difference, right? And tallying the states will give me something tangible to do to feel like I am doing something.

Silly, maybe. But it is all I have.

Expecting THE miracle,
Lisa

I am not so comfortable with expecting...
Do I have any right to expect something from God? I don't think that any scripture tells us to expect anything from Him.
Input on this would be greatly appreciated...

- Kathleen

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Friday, March 09, 2007

Her Blood On My Hands

Her name was Taylor. I never met her in person, but I could hear her sweet, high-pitched voice talking in the background while I spoke to her mother on the phone.

While we were getting ready to drive down the radio station for our Country Cares interview, a friend of mine called and gave me the phone number of a woman in Florida and asked me if I'd call her.

The woman was Taylor's mother. Taylor was diagnosed in the end of January with a similar brain tumor to Steven's, and she was trying to figure out what to do.

They weren't able to remove all of Taylor's tumor, and even after surgery there was more than one spot in her brain, as well as another possible spot in her spine. She'd already spoken to St. Jude and she had an appointment with Steven's doctor, Dr. Gajjar. She was scheduled to fly to Memphis February 19, the same day that we were there with Steven.

Because Taylor had tumor remaining after surgery, she fell into the "high risk" classification. Steven was considered "average risk" when he started at St. Jude because after surgery he had no visible tumor.

Whole brain radiation in a child is devastating. The radiation oncologist we consulted with at Children's Hospital Los Angeles shortly after Steven's surgery tried to reassure me about him having radiation by telling me that he'd most likely be able to care for himself as an adult. His intentions were good, but that comment still haunts me. Maybe we weren't being realistic, but we had our sights set higher than that.

High risk brain tumor patients at St. Jude receive a significantly higher dose of radiation than average risk patients. For a 3-year old, such a dose of radiation would most likely result in a very large IQ loss. A 3-year old receiving such a high dose of radiation would possibly not be able to care for themselves as an adult.

I recommended to Taylor's mom that she call and speak to Dr. Finlay in Los Angeles about the chemotherapy-only protocol he developed for children before she make a final decision about St. Jude.

Finlay was in the process of moving from New York to California when Steven was diagnosed, but we traveled to Los Angeles to consult with his representative before we decided how we wanted to proceed.

My fear with Steven was with the treatment. Finlay's treatment carries a 5-6% mortality rate from the treatment itself irrespective of the tumor, the doses of chemotherapy are so high that for some kids, their little bodies just can't tolerate it.

We so much wanted to avoid radiation if possible, but when push came to shove, I was too worried about Steven's existing medical conditions and his age (the really young kids tolerate the chemo better than the older ones) making him a poor candidate for the treatment. I had to ask myself whether I could live with myself if he didn't survive the treatment and I decided that I couldn't.

But if he'd been 3 instead of 9 it may have been a different story...

Dr. Finlay spoke to Taylor's mom and she was in Los Angeles when we got back from Memphis. I tried unsuccessfully to get in touch with them after we got back.

Taylor's mom called me late last night. Taylor started chemotherapy in Los Angeles on February 23. Four days later, on the 27th Taylor's mom decided to step out for a brief shopping trip.

When she got back, the nurse was changing Taylor's diaper and her mom noticed immediately that Taylor wasn't "right".

Taylor began having seizures, they put her on a ventilator, and a few hours later she was declared brain dead and they removed life support.

Just like that. Less than a week, Taylor didn't even last a week...

Taylor's parents and her 14-month old brother flew back to Florida yesterday. This time when I spoke to Taylor's mom she was sobbing and there was no sweet, high-pitched voice in the background.

If they'd just kept that appointment in Memphis I'm pretty sure Taylor would be still be here. The eventual outcome might have been the same, high risk patients have a very poor prognosis.

But when it comes right down to it, all we ever really have are gifts of time.

Rest in peace, sweet Taylor. It was never supposed to happen like this. I'm sorry, sorry, sorry...

For in much wisdom is much grief: and he that increaseth knowledge increaseth sorrow.
-Ecclesiastes 1:18

- Kathleen

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Thursday, February 15, 2007

From The Bottom Of My Heart

Kyra

February 15, 2007.

Eleven years ago today, four year old Kyra drew her last breath.

We found out that there was a monster growing in 3-year old Kyra's head at the end of June in 1994.

It was like a dividing line in my life. Before that day I had this simple faith in the natural order of things, children bury their parents and not the other way around.

Kyra before diagnosis
A week before diagnosis

I was seven months pregnant with Steven when I overheard Doug taking the call. I could tell something was wrong but I thought it was his grandmother, not Kyra whom we'd just seen and who had just turned three.

I will never forget our first visit to a pediatric oncology ward. Kyra had surgery, but her tumor was truly inoperable and all they could get was a small sample for biopsy. When we got there, they were waiting for results.

Walking into the ward for the first time took my breath away. There was a newborn in an incubator, crying and crying and his mother would put her arms in the gloves and reach in to hold the baby from the outside. Sometimes the mother wasn't there when the baby cried and I wanted so desperately to hold and comfort that small creature.

Kids riding down the halls on trikes and parents walking behind with IV poles. Most were bald, Kyra was missing a patch where they shaved her head before surgery, but for the most part her long blond hair was intact.

Doug and I stayed at a friend's apartment who was out of town. After that first day at the hospital we went back to the apartment and fell into bed. I woke after about an hour of sleep and went out to the living room, where I cried so hard I threw up, it was like a nightmare that wouldn't stop.

The next day we went back to the hospital, where Kyra's parents awaited the final results of the biopsy and Kyra's prognosis. They left me with Kyra and her new baby brother Gannon while they spoke with the doctors.

Kyra's oncologist came in to meet her for the first time. She did a neurological exam, then moved on to the cognitive portion. She asked Kyra what her name was.

Kyra said, "Kyra Megan Pillsbury, that's spelled K-Y-R-A-M-E-G-A-N-P-I-L-L-S-B-U-R-Y. See my baby brother, his name is Gannon Quinn Pillsbury, that's G-A-N-N-O-N-Q-U-I-N-N-P-I-L-L-S-B-U-R-Y."

Without prompting, she went on to give her address and phone number.

Kyra loved dress-up
Kyra loved to dress up

The oncologist gave me a look. She said, "well, I guess her cognitive abilities haven't been affected by the tumor. How old did you say she was?"

She was less than 2 months past her 3rd birthday.

I have met many kids with cancer who seem to have abilities beyond their years, and Kyra was exceptional. Beautiful, brilliant and articulate. Compassionate and generous.

She loved babies, and was the sort of person who would befriend anyone having a difficult time.

She loved those little stick-on earrings they make for little girls, and she had a whole collection.

Gannon, Steven and Kyra
Gannon, Steven and Kyra just before she relapsed

She loved band-aids and could never get enough of them, decorated in different patterns.

She had a jar in her room and she would make people pay her a quarter before they could do any procedures on her.

Most of all she liked to bestow gifts on those who came to visit, she needed lots and lots of those stick-on earrings and band-aids because she loved nothing better than to give them away to her visitors. Those who came to visit may have had to pay a quarter, but they were rewarded with many of whatever she had to give.

She would have given anyone anything of hers if they'd asked, her happiness was never measured by what she had, but by what she could give. At the age of three she knew she already had everything she needed.

Kyra holding Steven
Kyra and newborn Steven

She loved Steven, adored him. She held him in her lap when he was three weeks old and sang the Raffi song to him,

Baby Beluga in the deep blue sea,
Swim so wild and you swim so free.
Heaven above, and the sea below,
And a little white whale on the go.

Baby beluga, baby Beluga, is the water warm?
Is your mama home with you, so happy.

My words do not give sufficient honor to what she was.

Cancer is a despicable thief. Near the end, the massive doses of steroids she was taking to control the swelling in her brain made her nearly unrecognizable.

The last time I saw her, two weeks before she died, she lay on the sofa as I was leaving and told me the next time I saw her she'd be wearing a long green velvet dress and she'd have long blond hair.

The world is a poorer place for the loss of Kyra.

Kyra, I'm looking forward to the day when I get to see you in that dress with all that long blond hair.

Kyra's bench

From the bottom of my heart to the tips of the stars, I love you.

- Kathleen

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A Bereaved Father Speaks Out

This article below is from this week's Newsweek Magazine. It was written by a bereaved father who lost his son 13 years ago to a brain tumor at age 7.


Dear Junk Mailers: Leave My Son Alone

Thirteen years after his death, advertisers still target Jake with offers of tuxedos and snack cakes.

Jake's dad and photo of Jake

By Gary Wiener
Newsweek
Feb. 19, 2007 issue

When his 18th birthday arrived, my son, Jacob, became awfully popular. The U.S. Navy wanted him. "Before you find your place in the world, maybe you should see it first," it urged. A local menswear shop offered him 50 percent off a tuxedo package for high-school graduation. And a razor company sent him a free razor, hoping, I suppose, to make a lifelong customer out of him. Their only miscalculation was that Jacob didn't shave. Nor was it likely that any of the armed forces would gain Jacob's services. And he certainly wouldn't graduate from high school. Jacob, you see, died in 1993. He was only 7 years old when a cancerous brain tumor stole him from us.

As much as we loved Jacob, that period of our lives is still incredibly painful to remember. Yet, years after his death, letters addressed to Jacob find their way into our mailbox. Early on, I was driven almost to tears by these inducements for our son to attend a ritzy local private school or to sample a particular snack cake. I knew my wife would be devastated by such mail, and I tried to get to the mailbox first so that she would never be affronted by envelopes addressed to her dead first child. Much later, I realized she had been doing the same thing, hastily throwing out mail addressed to Jake so I wouldn't have to endure the epistolary abuse.

I thought I had learned not to take these mailings personally, but in the months surrounding Jake's 18th birthday I had to throw out dozens of letters soliciting my dead son. How galling it was to receive envelopes with bright colors and bold lettering urging him to have professional high-school graduation pictures taken, to consider a particular limousine service for prom night or to make sure not to drink and drive.

I won't dwell here on how wonderful and gifted my Jacob was, how he began to read before his 3rd birthday, how he was doing long division and double-column multiplication in his head when he was 5 years old. When Jacob died, one of our friends simply said, "I thought he would cure cancer." Like many children, Jacob loved the alphabet and numbers. Unlike others, he had a photographic memory and was capable of prodigious cerebral feats at a young age. One of his 4-year-old games was to memorize the license-plate numbers of every car on our street—and we lived on a fairly long street. Jake could see a car coming down the block, and tell you, without hesitation, what number house it was going to pull into. He would then proceed to inform you of what other license plates belonged to cars at that address. He also loved the 50 states, and could rattle them off in alphabetical order. Another of his games was to spell state names such as California—backward. So I can almost imagine him receiving these solicitation letters from all over the country and delighting in the return addresses. But he would have had no interest in their contents.

This direct-mail campaign aimed at my dead son is just one of many trials that the parents of dead children face. I didn't get overly upset when vandals knocked over his gravestone a few years back, nor even when the local TV station made a big story of it and actually showed the toppled stone on the 6 o'clock news. And though I'm not particularly pleased that, according to the Social Security Administration, "Jacob" has been the most common boy's baby name in America each year since 1999—and that every single mention of that word shoves me back to a time when my son, too, was alive—I think I've dealt with that as well.

The mail addressed to Jacob has slowed recently, but some still trickle in. As summer approaches, Jacob usually gets a few feelers from temp agencies looking to hire college kids on summer break. Or, ironically, an offer for low-cost life insurance. But that's about it.

I'm not dreading Jacob's 21st birthday, though I can't say I'm looking forward to the offers of credit cards, loans and invitations to try this brand of beer or some highland single-malt Scotch that are sure to find their way into our mailbox.

Where will it end, I wonder. On his 50th birthday, will we receive a solicitation from AARP?

When you are the parent of a dead child, you try, desperately, to keep his memory alive. You beam inside when people tell you that they remember him and that he was a nice boy. But he's been gone a long time, and now those comments are rare. The advertisers, though, will never forget Jacob.

Wiener lives in Pittsford, N.Y


Tomorrow, Steven, Sean and I will be going down to our local country music radio station, KSON for the annual St. Jude Country Cares Radiothon. If you're local, you might hear Steven and/or me interviewed. Sometimes Steven answers the phone. Sometimes he's too shy.

If you're not local and you've got broadband, you may be able to listen live.

The telethon runs between 7:00 am and 7:00 pm, I'm shooting for us to get down there around 10:00 am or so and we'll probably stay at least 2 hours.

It's a worthy cause. Our dream is that some day there will be a cure for all these sick kids, that so many families won't need to suffer.

- Kathleen

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Tuesday, August 08, 2006

Who's On First!

Steven teeing off at Mission Bay
Steven teeing off today at Mission Bay

As if the stress of having a child with brain cancer and other medical problems isn't enough, there's always medical insurance to deal with.

Our insurance company is CIGNA. We have a PPO, it's the best and most expensive plan offered by Doug's company. Our portion of our annual insurance premium is in the thousands of dollars.

I will forever be grateful for St. Jude for removing that particular piece of stress from our lives, since it was mostly them who dealt with CIGNA, and they paid everything that CIGNA didn't cover.

CIGNA approved Steven's treatment protocol in advance.

Mind you, that didn't stop them from calling me at the most incredibly inconvenient times, to tell me two days into one of Steven's stem cell transplants that he didn't have proper authorization to be in the hospital.

Never mind that he's midway through a stem cell transplant that CIGNA approved, but hey, we'll just pull him out of the hospital while CIGNA takes 48 hours to do a hospital preauthorization. And maybe someone can educate the geniuses at CIGNA that you can't do a stem cell transplant at home.

Steven

Today's tale is about very, very expensive shoes. $510 shoes. Plus tax.

Steven's arm and leg are longer on the right than the left, the discrepancy is increasing over time. Right now there is about a two-inch difference.

When Steven stands in bare feet, the right side of his pelvis is about 2 inches higher than the left. His spine curves back in the opposite direction, toward the right, so that his shoulders will remain horizontal. If he stays in this position long enough, the resultant scoliosis will be severe enough to require surgery.

We have been putting a lift in Steven's left shoe since he was in kindergarten to help correct at least part of this discrepancy. Currently he requires a 1 1/2 inch lift.

The price of our local cobbler putting in a lift has increased over the last 6 years, our most recent lifts costing around $65.

We buy Steven good quality shoes in the largest size he can tolerate, hoping that the shoes will last him a year. They usually do.

Steven's new $510 shoes
The shoes

Steven outgrew his last pair of shoes in May. When we went shopping, we found that he is now officially an adult sizes. We also found that comparable men's shoes are twice as expensive as for boys.

Finding shoes for Steven is a challenge, the lift means he can't have shoes with the lights in the sole, no Heelies, no fancy molded soles, no Nike Air, no tennies with those clear gel heels. He is always excited at the thought of new shoes and is always discouraged when nothing he likes is acceptable.

But Steven's life has been full of disappointments and he doesn't dwell on them for long.

This time Steven's heart was set on these shoes for $100. We've never spent that much on shoes for him, and I was worried that they didn't have enough sole on them to split.

He was insistent, and I don't really have the heart to say no, so I bought them and we took them to our cobbler. He said they were very difficult to split and it would cost $150, bringing the total cost of the shoes to $250. This was beyond my threshold for a pair of shoes.

I started to tell Steven the bad news, which he accepted. I could see tears in his eyes, and it dawned on me that the lift might be a covered medical expense under our expensive insurance.

So I called CIGNA and asked. They asked me many detailed questions and the upshot was that his shoe could be considered an external prosthetic device, and that our plan covers external prosthetic devices (EPD's) at 90%.

Certain steps were required of me to get this coverage. I had to go see Steven's in-network orthopedist ($40 copay) and get a prescription. I had to take the prescription to a special orthotics and prosthetics company to make the lift, and they would bill the insurance.

The orthotic device company called CIGNA independently to verify coverage. They gave them the exact billing code they would use. CIGNA reviewed our coverage and verified that EPD's were covered at 90%.

We sent the shoes out to get the lift. It turned out I was right after all, the soles on those shoes did not lend themselves to having a lift put in, so we returned them and Steven found another pair he liked, this pair was $110.

Two months after we began the process of buying new shoes for Steven, the lift was installed in the second pair of shoes and everybody was happy. Until today.

This was in today's mail:

CIGNA SUCKS!!!!

  1. Benefits are not payable except for those listed in the schedule of benefits (please refer to your plan booklet)

I checked the booklet. It says that our plan covers EPD's at 90%. So I called, and CIGNA noted that we'd been told it was a covered expense. They said they'd check into it and call me back.

When she called back, it went like this:

She: I spoke to the manager, and the explanation of benefits is correct, the claim is being denied. Costello: Well you know I've never met the guys. So you'll have to tell me their names, and then I'll know who's playing on the team.
Me: Why was the claim denied? Abbott: Well, let's see, we have on the bags, Who's on first, What's on second, I Don't Know is on third...
She: That is not a covered benefit under your plan. Costello: That's what I want to find out.
Me: Why was I told in advance of arranging for the lift that it would be covered? Abbott: I say Who's on first, What's on second, I Don't Know's on third.
She: I don't know why those people told you it was covered. We have reviewed it and it is not a covered benefit. Since you were told it would be covered, you have the right to appeal the decision. Costello: Don't you know the fellow's names?
Me: My plan states that external prosthetic devices are covered at 90%. Do you consider the lift in my son's shoe to be an EPD? Abbott: Well, I should.
She: I can't tell you that. Costello: Well then, who's on first?
Me: Who can tell me? Abbott: Yes.
She: You can find that in your plan booklet. Costello: I mean the fellow's name.
Me: My booklet doesn't tell me what you consider to be an EPD. Where can I find out what your definition of an EPD is, or more specifically, whether the lift in my son's shoe is considered an EPD? Abbott: Who.
She: I can't tell you that. There is no way we can draft a definition that will cover all devices that are submitted to us. Costello: The guy on first.
Me: I just want to know about my son's device. Abbott: Who.
She: I don't know. Abbott: The first baseman.
Me: Well, somebody knows what my benefits are. Can you direct me to a more complete description of my benefits? Abbott: Who.
She: All the information we have about our plans is on our website. Costello: The guy playing...
Me: I'm connected to your website right now. Where do I look for this information? Abbott: Who is on first!
She: Look under your Plan benefits. Costello: I'm asking you who's on first.
Me: I'm looking right now. I found a table that says that EPD's are covered at 90%. Abbott: That's the man's name.
She: It is not a covered benefit. Costello: That's who's name?
Me: Is it because you don't consider the lift to be an EPD? Where can I see a definition of what you consider an EPD? Somebody at CIGNA knows what an EPD is, how can I speak to someone who can answer my question? Abbott: Yes.
She: All the information we have is on the website. There is nothing more we can give you. Costello: Well, go ahead and tell me.
Me: I'm on the website, please tell me where to find the definition of an EPD. Abbott: That's it.
She: That information is only available to CIGNA employees. Costello: That's who?
Me: Let me get this straight. I pay for insurance from you, but the policy information you've provided me with doesn't tell me exactly what is and isn't covered. The booklet tells me to call if I have questions. I called, you advised me, now you're telling me I was incorrectly advised, but nobody can tell me why. Abbott: Yes...
She: You have the right to appeal the decision this one time. Next time it would be a good idea to get a predetermination of benefits. Costello: Look, you gotta first baseman?
Me: How long does that take? If I get a predetermination, will they give me a reason why my claim was denied? Abbott: Certainly.
She: A predetermination takes 45 days. It will tell you whether or not a particular service is a covered benefit or not. Costello: Who's playing first?
Me: How can I get a printed definition of the terms used in my benefits booklet? Abbott: That's right.
She: You can contact your employer, or you can look on the website. Costello: When you pay off the first baseman every month, who gets the money?
Me: Does my husband's employer have any information that isn't on the website? Abbott: Every dollar of it.
She: No, all the plan information is on the website. Costello: All I'm trying to find out is the fellow's name on first base.
Me: I want to speak with someone who can tell me if my plan covers my son's limb length discrepancy. Abbott: Who.
She: There is not a manager available right now. A manager will be in the office tomorrow, I can call you back. Costello: Who gets the money...
Me: OK. I give up. I surrender. The only reason I went somewhere that charges $400 to put a lift in my son's shoe is because you told me that's what I needed to do. I followed your rules. I did everything you told me to. Now you're telling me that my only recourse if I want you to honor your word is to file an appeal. Abbott: He does, every dollar of it. Sometimes his wife comes down and collects it.
She: Yes. Costello: Who's wife?
Me: And if you decide to cover this expense, it won't be covered in the future. Abbott: Yes.
She: It is not a covered expense. Abbott: What's wrong with that?
Me: And you won't tell me why it isn't covered? Costello: I wanna know is when you sign up the first baseman, how does he sign his name?
She: You can refer to your plan booklet or the CIGNA website. Abbott: Who.

I know it doesn't do any good, but I admit to raising my voice on the phone. OK, so I screamed a little, it could be heard a block away. When I got off the phone, I was in tears. I can't even begin to imagine how I am going to be able to speak to them about this again.

When you add in the cost of the therapist I'm going to need before this is over, these are going to be the world's most expensive shoes.

God grant me patience.

- Kathleen

p.s. Steven's MRI is two weeks from today.

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Monday, March 27, 2006

Please Pray For Zach


April '04 Zach came to visit Steven during his 4th stem cell transplant

Please, please pray with us for our buddy Zach.

We met Zach at St. Jude when we arrived there in October 2003 for Steven's radiation treatments. Zach is a year younger than Steven, and he had radiation at the same time for a different sort of brain tumor.


August '04 Steven and Zach at Elepalooza during Steven's first followup visit

We've become very good friends with Zach and his family (he has four brothers).

Although Zach's brain tumor is considered a benign, low-grade tumor with a relatively good prognosis for a pediatric brain tumor, Zach has had a very rough time of it.


November '04 Steven and Zach waiting for their brain MRI's

Zach has stenosis of the arteries in his brain, a somewhat rare side effect of radiation to the brain. Last fall they discovered that the carotid artery in Zach's brain was 80% blocked.

Last Thursday Zach had revascularization surgery in an attempt to cause new blood vessels to grow in his brain to compensate for the blocked blood vessels.


November '05 Steven and Zach at Le Bonheur hospital after Zach's angiogram

He came out of the surgery like a champ and went home Saturday morning.

But he returned to the hospital late last night due to a debilitatingly painful migraine and coordination issues.


March '06 Steven and Zach playing foosball at Grizzlies House

He worsened through the night and an MRI today revealed that he had a stroke. Zach's symptoms continue to worsen and he's been moved to intensive care.

They can't do anything but observe him, because of his recent surgery he is not a candidate for any of the treatments for stroke.

We love you Zach.

- Kathleen

Zach's caringbridge site
Zach's thestatus site (id=ross, pwd=reason-mail)

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Wednesday, February 15, 2006

Band-Aids For Broken Hearts


Our angel Kyra 5-1-91 to 2-15-96

She swam in an ocean of laughter
She danced in a desert of grace
The way that she loved those around her
Was written all over face
-- david m. bailey, brain tumor survivor --

Ten years, ten years since we held you...

For today, we wear bandaids over our hearts.

From the bottom of our hearts to the tips of the stars, we love you.

- Kathleen

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Tuesday, July 05, 2005

The Mother Gave, In Tears And Pain...


Claire Tatom
June 15, 1998 - July 4, 2005

"My Lord has need of these flowerets gay,"
The Reaper said, and smiled;
"Dear tokens of the earth are they,
Where he was once a child."

"They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear."

And the mother gave, in tears and pain,
The flowers she most did love;
She knew she should find them all again
In the fields of light above.

- Henry Wadsworth Longfellow -

- Kathleen

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Monday, January 10, 2005

Our Friend, Josh Ingledue

Josh Ingledue, a great kid from Iowa. Josh and his dad Dave were at Ronald McDonald House and Target House at the same time we were there.

Doug and the kids spent lots of time playing pool with Josh and his dad. Josh was diagnosed with Ewing's sarcoma at the age of 9 and he fought hard for 4 1/2 years for the right to grow up.

Josh joined the angels early in the morning on Wednesday, January 5.

This is from the January 11 issue of the Des Moines Register.


It was the only item on 13-year-old Josh Ingledue's Christmas list: a blue casket.

Josh, who would have been an eighth-grade student at Brody Middle School this year, died Wednesday after a four-year battle with cancer. Friends described him as a fighter, a charmer and "one of those kids that can talk you into anything."

He once talked Memphis Grizzlies basketball star Mike Miller into giving up an autographed pair of tennies, just by asking. Josh, a baseball player for South Des Moines Little League and a North Carolina Tar Heel fan, was buried in his blue casket Saturday.

During his illness, Josh relapsed several times, underwent multiple surgeries and endured stem cell and bone marrow transplants. In November, after spending 15 months at St. Jude Children's Research Hospital in Tennessee, Josh asked to come home to Des Moines to live out the remainder of his life.

"He knew there was no turning back if he came home," his father, Dave Chubb, said. "He was ready to call it quits."

It was almost as if he had it planned.

"He said, 'Dad, you have to promise me two things. I want to be buried on a Saturday so my friends can come. . . . and I want to die the first time it snows,' " Chubb said as he choked back tears.

By the early hours of Wednesday morning, Des Moines was blanketed by nearly six inches of snow.

"I know he knew it was snowing," Chubb said. "He loved it. He missed it when we were in Tennessee."

Josh was brave, strong-willed and kept a positive attitude throughout his sickness, those close to him said. He even talked to other groups of children at St. Jude about cancer.

"He was full of spirit," Chubb said. "He lived his whole life that way and he died that way."

Josh also loved practical jokes. Relatives and friends told stories about him initiating syringe water fights with nurses during chemotherapy, challenging NBA stars to video games at St. Jude and playing baseball with his brother Brian Ingledue.

Hundreds of friends showed up at a party for Josh when he came home in November. Now they are helping the family raise money to pay for a casket, mounting medical bills and the funeral.

Because Chubb spent so much time away from home caring for Josh, he had to leave his job as a youth service worker. Josh's mother, Michelle Ingledue, also spent much of her time away from her job to be with Josh.

"I promised I'd start this with him and I'd finish this with him," Chubb said.

Bob Egr, Josh's former Little League coach, organized a free-throw contest this weekend to raise money for the family. Spending much of the last two weeks with Josh "has been the most wonderful time in my life, seeing how strong he was," Egr said. "He's touched me so deeply, I can't even explain it."

Others, like family friend Ron Choate, owner of Small World in Valley Junction, felt compelled to help, too.

Choate will donate 20 percent of all sales this weekend to the family.

Van Ginkel Athletic Manufacturing donated the jacket Josh was buried in, a black Iowa Arsenal windbreaker representing the AAU baseball team Brian Ingledue played on and Chubb coached.

Most who knew Josh, who is also survived by brother Brandon Ingledue, say he was the kind of kid who left a lasting impression on those who knew him well and those who barely knew him at all.

"He just touched so many people," Chubb said. "He's amazing. He truly lived life to the fullest."


There's a really sweet video of Josh and his dad Dave here (Windows Media or Real Player).

Godspeed, sweet Josh.

- Kathleen

p.s. Cancer really, really, does suck.

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Tuesday, March 16, 2004

Cycle 3, Day +5: Cancer Sucks

Cancer sucks. Really. Truly.

We sit here and try to gain some sort of meaningful experience out of what is going on, we carry hope, but the bottom line is, it still sucks. Big time.

Cancer in your child, the flesh of your flesh, the little person in your image that is supposed to be your heir, the person that will bury you, take care of all your affairs, and inherit your wordly goods, that sucks even more. Truly it does.

The words of a good friend of mine that lost one of her two boys to a brain tumor three years ago echoes in my head, "How do you go from a family of four to a family of three"? I pray to God I never have to find out. As Jesus prayed in Gethsemane, "O my Father, if it be possible, let this cup pass away from me."

Another acquaintance of mine emailed me today and asked me about Steven's tumor pathology and I got it out and read it again so I could respond to her. I hadn't read it since Christmas, every time I read it I am sunk into despair, I feel the unusual nature of his tumor pathology does not make it a good candidate to respond well to this treatment, that there is no good treatment for this tumor, the pathology is inconclusive.

Then I look at him, he's doing well, and I think what a blessing that is, what a treasure he is.

I ran into the mother of Jacob, the little boy in the same trial as Steven who was hospitalized for fever last Friday. He is out of the hospital now, his blood counts are up, but he had his hearing test today, and it shows that he has lost considerable hearing in one ear. She was trying to figure out if she should request that the cisplatin should be reduced or omitted next cycle, he could lose more hearing, or it could stay the same, is the cisplatin needed for a cure, will the tumor recur anyway, are the negative effects of the chemo worth it?

Nobody can say. Dr. Gajjar is on vacation, but I gave her his email address, he almost always responds no matter what hour or where he is, so I told her to email him.

Steven's hearing in one ear was impaired before we started. His post-chemo hearing test will be next week. Will this be an issue for us too?

My father will be celebrating his 80th birthday later this month.

In the shuttle bus on the way back from the hospital today, Steven told me, "I want Grandpa and Grandma to live at least until Grandpa turns 102 and Grandma turns 98. I might have kids by then, and I want them to see their great-grandkids."

I was charmed, at the same time I felt like he'd punched me in the stomach.

Because it seems so far in the future, we haven't discussed with him yet the great probability that, as of the beginning of his chemo, his own biological kids are not in his future. We can only pray he makes it to the day where that issue arises.

Steven is neutropenic as of today, his blood counts plummeting as expected. He is also feeling sick, nothing to eat all day, congested nose, but no fever.

Tomorrow is his second dose of chemo (vincristine), done outpatient in the medicine room, also very likely he will receive blood. If a fever shows up, he will be hospitalized.

Cancer sucks.

- Kathleen

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