Joshua’s story
 

When Josh was only 11 he was diagnosed with a rare form of cancer that carried a name longer and more difficult to pronounce than most adults could tackle; Undifferentiated Embryonal Primitive Sarcoma of the liver. There are only 150 documented cases ever; nearly all of them fatal.

The diagnosis was a death sentence of sorts. Average life expectancy after diagnosis typically is about two months.

A month into Josh's diagnosis, the tumor had grown so large (nearly 40 pounds) that the doctors told them that there was nothing more they could do for their son. They could turn the ventilators off or do a risky surgery where he had an 80% dying on the table. They opted for the latter.

Josh not only survived the surgery, but astounded the doctor's!

Throughout the summer months, Josh was able to do many "normal" activities between chemo treatments. Fishing with grandpa, making homemade ice cream, play video games, he even rode a few roller coasters at Mall of America. 

However, in June of 2008, the doctors discovered several new tumors and surgery was scheduled.  There was nothing they could do.  Chemo ensued, yet the doctors seemed to give up.  But family and friends didn't and the Lord certainly would never leave him or forsake him.  This sparked life into the hearts of the doctors and they looked for another option.

Josh underwent another surgery in hope to have the same success as the first.  However, the tumor grew back with a vengeance.  He fought with all his might; strongly, bravely, with no thought for his own pain, but always looking to comfort others.

On August 19, 2008, after fighting for eight months, Josh went home to be with the Lord.  He had been sick for so long, he had been in such pain, yet he left this world with a smile on his face.  His legs that hadn't been able to move, are now swimming across the Jordon River; maybe even tubing  across it! He has a new body.  No more scars, sores, redness or blisters.  He even has hair!  His hands that were puffy with edema are either holding a remote, playing video games (and winning) or holding tightly to Jesus' hand.  One thing is for sure, he's running, jumping or skateboarding. He's happy.  He's whole.  He's pain free.  He's healed. 

Frogs have taken on a significant meaning for the whole family. The acronym, F.R.O.G. (fully rely on God) is the heartbeat of this tight knit group. The day of Josh's initial surgery, frogs popped up everywhere. His surgery was on February 29 (leap day). The Google home page displayed a dangling frog. The hospital gift shop was selling frogs galore. They even had frogs painted on the walls that seemed to have gone unnoticed by the family days prior.  They have been seen every where.

Ever since Josh's diagnosis, frogs have been "kisses from heaven." Just like the abundancey of frogs that we have found since Josh's surgeries and death, so are God's kisses to us.

F.R.O.G.

"Lord, there is none like You to help the powerless among the mighty. Help us, oh Lord our God, for we rely on You." 

2 Chronicles 14:11

The Leader-Telegram
 Eau Claire, WI

A Bridge of Hope

Hour after frantic hour, day after angst-filled day, Pete and Darla Holm have watched their son Josh's painful struggle against the cancerous monster ravaging the boy's body.
 
For nearly three months, Darla and the couple's other son, 9-year-old Jamie, have shuttled from their home in Eau Claire to Children's Hospital of Wisconsin in Wauwatosa and back, spending time with Josh while trying to maintain their lives here.
 
Meanwhile, Pete has remained with Josh for the duration of his hospital stay. As detailed in a Page One story in the April 6 Leader-Telegram, Pete and the family have undergone a roller coaster of emotions for what has been a mostly downhill ride. Pete worried as doctors attempted to determine what type of cancer was causing 11-year-old Josh's physical condition to rapidly worsen since the boy became sick in January.
 
He cried when they gave him the dire prognosis: Josh had an extremely rare, very aggressive form of liver cancer that afflicts fewer than 1 in 50 million. He listened helplessly as doctors gave increasingly pessimistic predictions regarding his son's health. He watched with the gut-wrenching pain only a parent can feel as Josh struggled both emotionally and physically to cope with the numerous difficulties posed by his disease.
 
And his heart swelled with pride as he watched Josh fight back, bit by bit, in the weeks following a Feb. 29 surgery his son had somehow survived against all odds.
 
"There have been a lot of tough times," Pete said of dealing with his son's ordeal. "It's just so much to cope with.  "Writing to cope.

So how does a parent enduring such a trying time deal with it? Like anyone with a loved one experiencing life-threatening medical difficulties, Pete and his family have relied on the support of friends and family. But Pete has discovered another, unexpected means of surviving the emotional minefield during Josh's fight against undifferentiated embryonal sarcoma of the liver.

The CaringBridge Web network was set up as a way to keep people apprised of sick relatives' and friends' medical conditions. For Pete, CaringBridge has been a ray of light in an otherwise dreary situation. On a nearly daily basis (sometimes several times per day) during Josh's 10-week stay at the hospital before his return home to Eau Claire last weekend, Pete posted messages on the CaringBridge site detailing Josh's ups and downs. Reading them gives insight into not only Josh's dire medical situation but also the range of emotions Pete and others who care for him experienced.
 
An entry dated Feb. 29, the day of Josh's surgery to remove his tumor, reads "Josh's surgeon just stopped in to let us know that JOSH MADE IT THROUGH THE SURGERY!!! THANK YOU LORD!" A posting the previous day hints at fears about Josh not surviving the procedure. "Remember when we talked about this earlier? It is a pretty risky procedure but (doctors) think there is no other option to relieve the pressure on my lungs," the message states. Some entries were long. Some were short. All allowed Pete not only to update others about Josh's ordeal but to express his feelings, providing him a much-needed emotional outlet.
 
"It was huge for me to be able to do that," Pete said. "That got me through a lot of tough times."
Pete wrote the entries as if he were Josh in an effort to make the site more readable to children, he said. Because he knew many of Josh's fifth-grade classmates at Eau Claire's Crestview Academy were reading the entries he posted, Pete purposefully made them sound upbeat while ensuring their accuracy.  "There was some stuff I just couldn't put on there. It would have been too depressing for the kids," Pete said. "The upside of that was it forced me to focus on the positives."

Others lift father's spirits
It isn't just messages Pete has posted that keep him going despite the difficulties posed by Josh's illness. Notes of encouragement others have left on the CaringBridge site also have helped. So far, nearly 1,200 messages have been posted there. Many are from friends and family, but some are messages from people who have never met Josh and are inspired by his story. On many occasions Pete reads the messages to Josh.
 
"The support has been overwhelming," Pete said of messages from others. "Sometimes I would read and reread postings as a way to deal with what was going on. We wouldn't have made it through this without them."
 
Despite Josh's having beaten the odds against his disease so far, doctors say he faces an uphill fight to survive. Most people with his malady die within two months of diagnosis. Josh already has beaten that timeline. So far, he's stubbornly confounded the experts in spite of having the fastest-growing tumor his doctors have seen. On Monday, he and Pete returned to Children's Hospital where Josh will continue to receive chemotherapy treatments and undergo arduous rehabilitation.
 
You can help Josh by sending him a message yourself. Right now, he and his family can use all the assistance they can get.
 
Emerson can be reached at 830-5911, 800-236-7077 or julian.emerson@ecpc.com.



Apr. 12, 2009 (McClatchy-Tribune Regional News delivered by Newstex) -- Josh Holm's young life ended prematurely last August when the 11-year-old Eau Claire boy died after fighting an extremely rare form of cancer, but his spirit lives on as his courageous story inspires his family and others to help those in need.
As Josh's family continues to come to terms with his death, they have found peace in reaching out to others.
Despite their grief, Josh's parents, Pete and Darla, have maintained relationships with children and parents they got to know while Josh was receiving medical care at Children's Hospital of Wisconsin in Wauwatosa.
Never mind that the day after Josh's funeral Darla was diagnosed with an aggressive form of breast cancer that has hospitalized her for much of the time since. The couple is determined to give.
Since October they have organized care packages for students at the hospital, individualizing them with gifts -- ranging from Wii video games to Superman socks -- that those kids will appreciate. On some occasions they sent the packages in the mail; other times they hand-delivered them.
Each package includes a red-eyed tree frog stuffed animal in memory of Josh. The amphibian was Josh's favorite animal, and during his fight against cancer the family clung to the tree frog as a symbol of hope. Josh's friends and classmates at Crestview Academy in Eau Claire sent him hundreds of paper frogs during his hospital stay, and the family adopted a FROG acronym -- Fully Rely on God -- as a symbol of their faith.
The Holms have paid for the care packages -- which average about $100 per child -- mostly out of their own pockets, even though Darla is no longer able to work. Pete said they eventually would like to offer a care package to each child entering Children's Hospital but lack the money to do more.
"Ninety percent of these kids are going to die," Pete said as his eyes teared up. "Our mission is to take these kids' minds off of the awful stuff they're going through, even if it's just for a little while."
The Holm family's desire to give back is spurred by the help they received while Josh was ill. Eight months after he died, they remain overwhelmed by how many people reached out to them.
"People did so much to help us, and we want to find a way to give some of that back," Pete said, noting people continue to donate money in Josh's memory, often purchasing green bracelets inscribed with "FROG."
Now their desire to help others will extend beyond critically ill children. The Holms, who operate the Eau Claire-based temporary job service Midwest Labor, are partnering with a Chippewa Falls-based national nonprofit outreach agency, Touched Twice United, to run a free clinic April 25. The clinic will offer a variety of services -- ranging from medical screenings to haircuts -- designed to help people who can't otherwise afford them.
The FROG Clinic, which will be at Midwest Labor in downtown Eau Claire, originally was the idea of Pete's mother, Judy Holm, who recognized the many needs of Midwest Labor's clients.
Judy heard about Touched Twice United through a relative and contacted the organization to see if it could help her set up the clinic. Touched Twice was more than willing to get involved. It is working to line up services such as blood pressure and diabetes checks; health, vision and dental screenings; substance abuse assistance; job skills assessments; and clothing vouchers.
"A lot of people out there just need a helping hand so they can step up to a better place," Judy said. "That's what we're trying to do."
Some of the services have been arranged, but the Holms still are looking for donated help -- especially from medical and dental providers -- to make the clinic a reality.
Throughout Josh's ordeal with cancer, he often told his family that he hoped his suffering would somehow help others deal with problems in their own lives.
Now, it seems like assisting with the FROG Clinic is the best way to keep Josh's spirit alive.
 http://www.caringbridge.org/visit/joshholmmailto:julian.emerson@ecpc.comshapeimage_3_link_0shapeimage_3_link_1

The Leader-Telegram

Eau Claire, WI
April 6, 2008


Halting the operation on the 11-year-old boy barely clinging to life went against everything Dr. Marjorie Arca believed in. During her five years as a pediatric surgeon at Children's Hospital of Wisconsin in Wauwatosa and three years before that at an Ohio hospital, Arca had operated on plenty of patients with unusual, serious, challenging diseases. Arca always did whatever was necessary to save her patients' lives. That's what doctors do.


But this case was different. When Joshua Holm of Eau Claire arrived at Children's Hospital at the end of January, doctors

Dr. Marjorie Arca

didn't know what was wrong with him. He was subsequently diagnosed with undifferentiated embryonal sarcoma of the liver, an extremely rare, highly aggressive cancer that occurs most often in children. The diagnosis was a death sentence of sorts. Average life expectancy after diagnosis typically is about two months, and only a handful of people have become cancer free.
Josh's case was problematic even for this difficult disease. The tumor surrounded most of the left side and part of the right side of his liver. The rapidly growing cancer had spread beyond the liver and filled his abdomen, surrounding major blood vessels, stomach and other organs.

During the previous month, Josh's weight had ballooned from 101 to 162 pounds. He gained an improbable 11 pounds in just one day despite ingesting no food during that time. His legs swelled to several times their normal size, making his toes appear like tiny spikes protruding from club feet. His ankles disappeared as his body retained an increasing amount of fluid.

To accommodate Josh's growing size, his grandmother Judy Holm bought extra-large men's clothing for him. Still, the socks had to be cut to fit over the boy's swollen feet. "I remember one day I peeked under the blanket to look at his legs and thought, 'My God, that's just not right,' " Judy said, her voice wavering as tears streamed down her cheeks. "I'd never seen anything like it. I knew it was Josh, but it sure didn't look like him."

Initially, doctors had difficulty diagnosing Josh's condition. Once they pinpointed the disease, doctors treated the tumor with chemotherapy, but that effort failed to curb the cancer's growth, and Josh's condition continued to deteriorate.

On Feb. 27, a team of physicians overseeing Josh's case presented his parents, Pete and Darla Holm, with a seemingly hopeless choice: Let Josh die peacefully during the next several days or perform an exceedingly risky operation that would almost certainly kill him.

The Holms opted for the surgery. At 8 a.m. Feb. 29, Arca began the procedure. She knew it would be dicey.

The enormous tumor and the surrounding gelatinous, cancerous goo filled much of Josh's torso from his chest to his waist. The tumor had collapsed one of Josh's lungs and part of the other, forcing him to use a machine to breathe. It also pushed his stomach and other organs down near his pelvis, squeezing them together while stretching his esophagus. Eating had become virtually impossible.

Complicating the surgery was the fact that the tumor was intertwined with blood vessels that fed the cancer. Removing the tumor amid the myriad arteries and veins without damaging them and causing Josh to bleed to death would be like navigating a minefield. During a much simpler biopsy procedure Arca had performed several weeks earlier, Josh's tumor had bled profusely, requiring a blood transfusion.

Now, minutes into the operation to remove the tumor, Arca's fears were realized. She cut into Josh's lower abdomen where the blood vessels would be least numerous. But the boy began to bleed anyway. And the cancer was everywhere.

"I've never seen anything like it," Arca thought as she gazed at Josh's tumor. "It's absolutely huge."

Arca and attending physicians drained more than a liter of the cancerous liquid from the lower abdomen and pumped blood into him, replacing what was lost to his bleeding during the procedure. She had planned to siphon cancer from more of Josh's torso, but now she wasn't sure that was possible.

"I figured we might be done at that point," Arca said. "I thought for sure he was going to bleed out, and I didn't know if I could continue."

On Jan. 15, the usually energetic Josh stayed home from school after complaining of fatigue. The youngster rarely missed school, in large part because he enjoys the company of his Crestview Academy classmates so much that he fights with his parents to attend class, even if he isn't feeling well.

This time Josh seemed unusually tired and "looked a little green," his mother said. Still, his parents figured he had the flu bug and would bounce back in no time.

Instead, Josh felt increasingly worse, and after several days his parents took him to Sacred Heart Hospital. Tests show
ed he was anemic, so doctors prescribed extra iron.

However, Josh's condition continued to worsen, and several days later his parents noticed his stomach had begun to swell noticeably. Worried, they took him to the emergency room where tests led doctors to believe the boy was suffering from a pancreatic condition. The next day, Josh was transferred to Marshfield Clinic in Marshfield for more tests. That night, Darla, at home with her 9-year-old son, Jamie, received a phone call from Pete telling her she needed to come to Marshfield right away.

The news was grim. Doctors had discovered a huge tumor on Josh's liver that spread to the surrounding area. They were uncertain exactly what type of cancer the boy had and informed Darla and Pete that they didn't have the expertise to treat it.

The couple tried to get their son transferred to St. Jude Children's Research Hospital in Memphis, Tenn., but were unable to do so. Medical personnel recommended the Holms seek medical care for Josh at Children's Hospital of Wisconsin in Wauwatosa, and they decided to do so despite misgivings about the Milwaukee area.

"We were looking for answers, but we didn't have any," Darla said. "We were scared to death."

When it comes to serious diseases, Children's Hospital of Wisconsin physicians have just about seen them all.

The Wauwatosa facility has gained renown for its successful treatment of a variety of unusual medical cases, including a much-publicized case in 2004 in which doctors devised an innovative procedure to save the life of then-15-year-old Jenna Giese of Fond du Lac who was admitted for a rabies infection after being bitten by a bat. Before that case, rabies had been considered fatal in unvaccinated patients such as Giese.

Still, Josh's case perplexed Children's Hospital physicians. Upon his arrival in late January, he underwent a battery of tests and a biopsy. But doctors still couldn't determine the exact type of liver cancer Josh had.

"The uncertainty of not knowing what Josh had and watching him get worse was awful," Darla said.

Finally, the family received the grim news.

Any cancer is bad. Because of the importance of the liver in regulating a number of important bodily functions, cancer of that organ is especially problematic. And on the roulette wheel of diseases, undifferentiated embryonal sarcoma of the liver is about as unlucky as it gets.

According to medical journals, during the past three decades there have been only about 150 documented cases of the disease worldwide, and Josh is believed to be among a handful of people in the United States with the affliction. The odds of his contracting the condition are somewhere around 1 in 50 million.

Doctors at Children's Hospital hadn't dealt with the illness. In fact, there is so little information about how to treat that specific form of liver cancer that Children's Hospital doctors were charting their own treatment course for Josh.

Anne Warwick, assistant professor of pediatric oncology, and other Children's Hospital doctors searched for clinical studies detailing successful treatment of the disease, but most of them included only a couple of individuals instead of the usual larger numbers.

"We don't have enough data to determine the best course of treatment," Arca said. "It's just not available."

The size of Josh's tumor -- and its rapidly increasing size -- added to treatment difficulties. By the time Josh arrived at Children's Hospital, the fast-growing mass already caused his stomach

Dr. Anne Warwick

to bulge abnormally. As the mass grew, it not only endangered Josh's organs but squeezed his veins, restricting blood flow to his limbs. Doctors knew time was running out.

The team of doctors treating Josh arrived at a couple of options. They could surgically remove as much of the tumor as possible. But the process would be extremely risky, and they figured Josh most likely would bleed to death during the operation.

Instead, they recommended chemotherapy. The chemical cocktails that target cancer cells worked well initially, and Josh felt slightly better for a short time. But the tumor continued to grow, and Josh's condition worsened again. He was placed on a ventilator after his lungs became too compressed by the tumor to supply his body with oxygen and expel carbon dioxide. Josh's heart rate raced, pounding along at 170 and 180 beats per minute, and his kidneys' function waned as the tumor compressed them.

The growing tumor caused another problem for Josh: extreme discomfort. The mass was crushing his organs. He was unable to eat or drink, and when he tried he vomited repeatedly.

The healthy, energetic boy who had enjoyed playing video games and socializing with friends had been replaced by an immobile child with a badly swollen stomach and legs who slept much of the day, struggling to breathe.

"It was so hard to watch," Pete said of his son's difficulties. "Josh was slipping away."

Pete and Josh Holm have always been close. They like to toss a football around.
They enjoy watching the "Spongebob" TV show or squaring off in video game competitions. Most of all, they have an affinity for hanging out together.


That bond grew closer during their time at Children's Hospital. Wherever Josh went, his father was by his side. In fact, Pete has remained at the hospital since Josh arrived, leaving his job at the Midwest Labor employment agency in Eau Claire. Darla, Jamie and other relatives and friends visit often, but Pete has been the constant in Josh's life during his ordeal.

"Somebody had to be here 24 hours a day," Pete said. "And as sick and emotional as he was, it had to be the same person, so he had that comfort level. On the first day here I told him I'm going to be with him until we come home."

He provided comfort when Josh underwent one painful test and procedure after another. He pushed the pain medicine button intended to numb the agony when Josh was too weak to do it himself. He reassured Josh when things went wrong. He spoke with his son even though the boy couldn't talk back because of the ventilator he needed to keep breathing. He calmed Josh when his son sobbed with frustration. He laughed with his son.

And he was there to cry.

"There have been plenty of tears," Pete said.

Darla has shed her share of tears too. She cries each time she makes the four-hour return trip home from the hospital with Jamie as they try to maintain their lives in Eau Claire while wishing they could remain at Josh's side.

"I think about Josh all the time, how I wish I could be with him and help him somehow," she said.

The charismatic Jamie worries about his brother too. And Josh's illness has made him ponder his own mortality.

A few weeks ago, while home with the flu bug, Jamie asked his mother if he had contracted cancer too. He continued to fret despite Darla's assurances that he would be OK.

The Holms aren't strangers to medical difficulties. Nine years ago, Darla gave birth to Jamie, who was born six weeks premature and required extensive medical care. Just three months later, Darla was diagnosed with stage four cancer of her milk ducts. The cancer had spread to her lymph system, and the prognosis wasn't good.

But Darla was a fighter. For two years, she underwent chemotherapy treatments before the disease was knocked from her body. She had beaten the odds.

When Josh was diagnosed, the Holms couldn't help but wonder why cancer had revisited the family. Hadn't they suffered enough?

But in a strange way, Darla's illness has provided the family with a ray of light amid the darkness. If she could beat a tough form of cancer so could Josh, they reasoned.

"We know the odds aren't in his favor," Pete said. "But what happened with Darla does give us hope."

The initial chemo treatment for Josh's cancer had failed, but doctors kept searching for ways to curb its growth.

They continued to consult with physicians at medial facilities elsewhere, such as Duke University Medical Center in Durham, N.C., and St. Jude Children's Research Hospital, and decided on a process known as chemoembolism in which arterial blood flow to tumors is blocked, cutting off its nutrient supply. Chemotherapy drugs are then pumped into the arteries, allowing for a more specific targeting of tumor cells.

The portion of the tumor on the right side of Josh's liver was a prime candidate for the process because of the many arteries there. Tests showed the process has shrunk cancer cells in that area.

But the treatment wasn't feasible on Josh's left side because of a lack of blood vessels. That part of the tumor, which comprised the majority of the mass, continued to grow, and Josh's condition deteriorated.

"It was awful," Darla said of watching helplessly as her son moved closer toward death. "The doctors were trying so hard, but they were running out of options."

Some of Josh's fifth-grade classmates at Crestview and their parents journeyed to Children's Hospital to visit him. The visitors boosted Josh's spirits and those of his family, but on most occasions he was too sick for visitors.


During one afternoon when Josh felt particularly weak, friends and family extended their hands to his bed and prayed for him to get well again.

"At that point we felt like prayer might be our only hope," Judy, Josh's grandmother, said.

By Feb. 27, there weren't many options left. Josh's cancer-ridden body had swollen to 160 pounds as his stomach protruded
grotesquely. Even with the help of a machine, Josh labored to breathe.

Doctors met with the Holm family that day to give them the bad news. Josh likely would die within a few days without surgery. So far they had avoided surgery because it was deemed too risky. Now Pete and Darla wondered whether it represented the last opportunity for their son's survival.

Michael Kelly, a Children's Hospital pediatric oncologist, got involved with Josh's case. Kelly didn't mince words. He had pushed for a more aggressive chemotherapy regimen for Josh. Now he urged the Holms to opt for surgery.

Pete and Darla asked whether they could delay the decision until Monday, but Kelly told them if they waited that long, Josh would die. However, Kelly and others doctors were blunt about the slim chance that the surgery would save Josh's life. The best-case scenario was he would survive the procedure, buying perhaps as much as two weeks of life.

"And that was a pie-in-the sky goal," Arca said. "We just hoped to get him out of the surgery alive, to buy him a little more time so his family could say their final goodbyes."

The gravity of the situation hit the Holm family like a heavy weight on their hearts.

"When they told us he's not leaving this hospital, that he's going to die here no matter what you do, that was the very bottom," a teary-eyed Pete recalled.

The couple debated whether to put their son through another painful procedure that was unlikely to save his life. Unexpectedly, Jamie helped them reach a decision.

"You need to do it," Jamie told his parents. "Josh would want us to."

They agreed. The surgery was scheduled for Feb. 29.

Like the other doctors involved with Josh's case, Arca had her doubts about whether the surgery would work.

"I was pretty fatalistic about it," she recalled. "I said maybe we could take the breathing tube out and have him talk to (his family) one last time. I just didn't think we could do anything to make this tumor any better."

Despite her doubts, Arca felt a duty to try to save Josh's life. Fearful of the delicate dangerous procedure, she sought inspiration at the hospital chapel before the surgery.

As she scrubs up before each surgery, Arca asks God to guide her hands. This time, however, she wanted more guidance.

"I figured this warranted a longer conversation than my usual two minutes. So I went to (God's) house. I told him I really needed his help with this one," she said.

Meanwhile, the Holms were saying prayers of their own. For six weeks, they had seen Josh's condition go st
eadily downhill. Each attempt to improve his situation had failed. Now he faced his last chance to live.

"We knew in our minds he probably wouldn't make it," Judy said. "But in our hearts we were saying, 'Yes! Yes! You've got to live!' "

About an hour into the surgery, the Holms received a phone call informing them that Arca didn't know whether she could continue the procedure. Despondent, they immediately left the pancake house where they had gone for breakfast and returned to the hospital, fearing the worst. On the drive back they prayed for Arca to forge ahead with the surgery.

When they arrived at the hospital, they received another call. This time they were told Arca had continued with the procedure and that some of the cancer had been successfully removed.

"At that point we really didn't know what was going on," Pete said. "We were on pins and needles. All we could do was wait and hope for the best."

Meanwhile, Arca and her team continued to remove the tumor, bit by bit. Arca's surgical strategy wasn't textbook. Instead of making one large incision and removing as much of the tumor as possible at once, she would make numerous smaller cuts, remove smaller portions of cancerous material, then stitch the incisions in an effort to reduce Josh's chances of bleeding to death.

Cut, delicately remove tumorous material, stitch. Then repeat. And hope to keep bleeding to a minimum.

Even with the small incisions, initial heavy bleeding prompted Arca to consider stopping the operation. She didn't want Josh to die on the operating table.

But Arca had recruited a secret weapon for the occasion. She had requested a specific anesthesiologist for the procedure. He was a parent, and she knew he would push her to continue the procedure when it became difficult.

"He helped me think about it not only like a doctor but also like a parent," Arca said. "All of us in that room were committed to doing whatever we could to keep Josh alive."

Besides the possibility of Josh bleeding out, the sheer amount of cancer to be removed proved daunting. The tumor, a mix of soft tissue and a softer, cancerous gel, was huge. All told the surgical team removed about 24 pounds of cancerous material from Josh's body.

Despite challenges and her initial doubts, the surgery worked better than Arca had anticipated. She was able to remove nearly all the tumor on Josh's left side, and he lost relatively little blood during the process.

"As the surgery progressed I was more emboldened because (Josh) wasn't bleeding out," Arca said. "So I just kept going and hoping for the best."

At 1:30 p.m., five and a half hours after the operation began, Arca walked into the waiting room to meet with the Holms, a smile lighting her face. The surgery had been a success. Arca and Josh had beaten the odds. The boy was alive.

A combination of surgical skill, determination and maybe just plain luck had pulled Josh through a surgery his doctors didn't think he would survive. As he visited with his family after the procedure, Josh proudly showed off his much-smaller stomach, its surface lined by a fresh 13-inch scar.

As she had done weeks before the surgery, Judy peeked under the bedcovers to check on her grandson's legs. She could barely believe they were back to their normal size, and she fell to the floor crying with gratification.

But Josh wasn't out of the woods yet. Not by a long shot.

With the removal of the tumor and subsequent fluid, Josh's weight plummeted to less than 90 pounds. The procedure and his illness had left him extremely weak. He was unable to perform even simple tasks, like sitting, without help.

Bit by bit, day by day, with the aid of nurses, therapists and other medical professionals Josh began to rebound. There was simple therapy like trying to squeeze a small piece of foam between his fingers to regain coordination and strength. Then, as he progressed, he was able to sit up, first with help, then by himself. Every gain, no matter how small, was cause for celebration.

Throughout the process, Josh has continued to exhibit a fighting, stubborn spirit. When doctors asked him to do an exercise 10 times, he would do 20. When they wanted him to take 15 steps on the first day he walked with the assistance of a walker, Josh shook his head no and quietly said, "I'm going to do more." He ended up pacing off 61 before stopping, exhausted.

There were other milestones. Days after the surgery, Josh was able to eat part of a Popsicle. It was the first time since January he had been able to keep food down without vomiting.

Josh spent part of that same day with several friends. They talked, played video games and just hung out. That night, Josh slept with a smile on his face.

"It's the first time in a long time I'd seen that smile," an emotional Pete said.

Throughout Josh's illness and recovery, Pete has been amazed at his son's resiliency.

"He's doing things nobody expected he'd be able to do," Pete said, his pride in Josh evident in his voice. "He's bound and determined that no matter what, he's going to beat this."

First one tepid, shaky step, then another, then another.

Josh spent part of a recent afternoon struggling to walk again. Relearning that task has been perhaps the most challenging aspect of his recovery. He can walk short distances with a walker, or holding his father's hand. But he's unable to amble along on his own for long.

"He gets tired so fast," Pete said.

Shortly after his surgery, Josh began another round of chemo treatments. Last weekend, tests showed that while the tumor on his right side has shrunk, the cancer on his left side has started growing again. So doctors started him on another chemo regimen.

Josh endured the first couple of days relatively well, but as the week wore on the chemo took its toll. On Friday, he came home for the first time since January so he can attend a fundraiser today arranged to help his family pay medical bills.

Chemo-induced nausea and vomiting nearly derailed the trip. Pete had to stop during the drive back to Eau Claire as Josh was overcome with wave after wave of sickness.

As Pete's white truck pulled into the driveway, Darla scurried outside, opened the truck door and embraced her son. A moment later, Josh took a few uncertain steps from the truck to a wheelchair.

Friends and relatives greeted Josh inside the Holms' house. He smiled a couple of times and chatted softly on occasion, but mostly he sat quietly, overwhelmed by nausea and eager for bed.

"He's so, so tired," Darla said. "But it's good to have him home."

Josh's doctors express amazement that he's survived this long, that he survived his Feb. 29 surgery at all. But, when pressed, they said they believe his cancer will kill Josh.

The Holms know that's a distinct possibility. But they also know that their son already has beaten the odds. And they know that, nine years ago, Darla beat the odds too.

They credit Josh's unlikely survival so far to a combination of the efforts and the skills of Children's Hospital physicians, the assistance of friends and their unwavering faith in God.

"There have been a lot of tough times, and there will be tough times ahead," Darla said. "But we have faith that things will turn out.

"All you can do is take it one day at a time and hope for the best. You've just got to keep believing."

Emerson can be reached at 830-5911, 800-236-7077 or julian.emerson@ecpc.com.

 

Printed in the

LEADER-TELEGRAM

Eau Claire, WI

August 20, 2008

By Julian Emerson




Heroic boy dies, never surrendered will to live


Despite the long odds against his outliving an extremely rare and aggressive form of cancer, Josh Holm and his family exhibited such a strong sense of faith it was hard to bet against the 11-year-old Eau Claire boy beating the disease.

For a while, that's just what Josh did.

Josh Holm, 11, of Eau Claire died Tuesday after a months long battle against a rare, aggressive form of cancer.  His courage and resolve inspired many of his friends and others in the community. Funeral arrangements are pending

He lived through a last-ditch, extremely risky surgery Feb. 29, hanging on against all odds throughout a procedure doctors at Children's Hospital of Wisconsin in Wauwatosa didn't expect him to survive. He persevered during months of grueling rehabilitation and chemotherapy treatments, at times recovering enough to show glimpses of his former energetic self.

He fought through a chemotherapy-induced sickness in April to return home to Eau Claire to visit friends and family and attend fundraisers organized to help his parents pay his medical bills.

And he struggled against fatigue and pain the past couple of months as his cancer returned full force.

On Tuesday, his ordeal ended. Josh died at Children's Hospital.

Josh began feeling seriously ill in January and was subsequently diagnosed with undifferentiated embryonal sarcoma of the liver, which afflicts only about 1 in 50 million people.

As Josh struggled against his disease, he served as an inspiration to those who learned about his condition. Josh's parents, Pete and Darla Holm, were overwhelmed by the countless letters and phone calls of support they received wishing them and Josh well. People flooded the CaringBridge Web site set up for Josh with stories of how his story had positively influenced them.

Crestview Academy students backed their classmate in the form of the hundreds of paper frogs they made in honor of the "Fully Rely On God" phrase Josh's family adopted as a way to deal with his illness. Some traveled to Wauwatosa to visit Josh.

Josh's strength and quiet resolve throughout his difficult situation was especially striking to his family. He told them often that he hoped his suffering would somehow help others deal with problems in their own lives.

"He was a fighter, and he hoped that his fight would serve as an example for other people," said Josh's grandmother, Judy Holm.

 

CBN.com

Selah: More Than the Music

By Heidi Krumenauer
CBNmusic Guest Writer

Josh Holm is a lucky kid if you look at in the sense that he has family, friends and even a popular Christian music group loving him every day. But under all that love and all their prayers, 11-year-old Josh has been dealt some tough cards. There's nothing lucky about being one of only 150 known cases of a very aggressive and rare form of liver cancer (Undifferentiated Embryonal Primitive Sarcoma), with a life expectancy of two months. Diagnosed the end of January, Josh's aunt Rebecca LaCount, says, "It's an absolute miracle that he's still with us!"

Josh's Story

One month aft
er his diagnosis, Josh's tumor had grown to nearly 40 pounds. His young body had ballooned to 168 pounds, gaining 65 percent of his body weight in only three weeks -- 11 pounds in one day from only IV fluids. Doctors told the family there was nothing more they could do. They suggested the family turn off his ventilator and prepare to say good-bye. Their only other option was a risky surgery that would offer Josh a mere 5 percent chance of survival.

According to Josh's father, Pete Holm, the family prayed about whether they should consider surgery as an option. "At one point I said, 'I feel like we need to lay him on the altar, like Abraham did with his son, 'If you want him, Lord, he's yours; if not, we know you have a huge plan for him.'" So they opted for the surgery where doctors removed nearly 24 pounds of the deadly tumor.

Surprising, Josh survived the surgery and he continues to shock his doctors as he has surpassed the usual two-month death sentence. "He's doing things nobody expected he'd be able to do," Pete says. "He's bound and determined that no matter what, he's going to beat this."

A Long and Winding Road

Josh's parents, Pete and Darla, have traveled tirelessly on the four-hour route with nine-year-old brother, Jamie, from their home in Eau Claire, Wisconsin to the Children's Hospital of Milwaukee. For more than 68 days, Josh was a full-time patient at the hospital (including 17 days in ICU and 12 days on life support), but since that time he's made weekly return trips to the Children's Hospital for chemotherapy. A couple days at the hospital and then a few days at home. And the next week, it's a few more days at the hospital. Shuttling back and forth for chemo treatments has become an exhausting routine, and often one that has become quite long. When the chemo doesn't set well in Josh's body, he becomes ill on the road, turning the four-hour drive into a trip that can last as long as nine hours!

Unfortunately, that routine won't be ending anytime soon. Pete says they're not sure what the future holds, but they are planning for 18 months of chemo and then possibly a resection of what's left of the tumor after that. At this point, doctors are not updating Josh's prognosis, but they remain "cautiously optimistic."

Optimistic, yes, but still shocked, says Pete. In a recent conversation with the resident oncologist, they discussed Josh's amazing recovery. Pete told him how Josh had taken his walker and literally started running across soccer field for about 30 feet. "I told the doctor, 'I think Josh thinks he's invincible.' He said, 'Don't argue with him...I think he's invincible, too.'" That was the same doctor who just a few months ago was telling the family to let go because Josh would
n't make it out of the hospital.

While Josh's doctors are astonished that he's survived this long, they acknowledge that Josh is not out of the woods and the possibility of death is still a very real possibility. The Holm family understands that, but they also understand the odds he's beaten so far. They are thankful to a team of skilled physicians, modern medicine, family, friends, and steadfast faith in God.

"I would say I've always believed, and now I know that anything's possible," says Pete. "It's hard to say this situation has changed my faith, because I've always believed it's in God's hands. He has a plan for you, and I know that. This has taken me to the point that I'm willing to tell anyone about it, though. It has taken my fear out of telling people that God is good...I have such a desire now to share that news."

And Josh has stayed true to his faith, too, during this difficult time. "Josh's belief and faith in God has grown a lot," Pete says. "Josh tells us, 'I know God's got something good for me, or He wouldn't put me through this.'"

One Day at a Time

With endless trips to the hospital and routine chemo treatments, Josh is still thinking and acting like a normal pre-teen boy. Hanging out with his friends is by far Josh's greatest passion. He's started collecting things, too-frogs, for one. In fact, frogs have become Josh's logo, of sorts. The acronym, F.R.O.G. (fully rely on God) is now the symbol of his family. And more than anything, Josh wants to go swimming again. Within a couple weeks, that will happen, says Pete. And after that, it's one day at a time.

Josh's New Friends -- Selah

Selah's female vocalist, Amy Perry, became friends with Josh's aunt, Rebecca LaCount, about a year ago. Over the year, they've grown so close that when Rebecca started to organize a benefit for the Holm family in Madison, Wisconsin, she calle
d on her new friend to see if Selah could help in any way. Her timing was, well, it was God's perfect timing. Amy was in Nashville attending the funeral for Todd Smith's (Selah's male vocalist) daughter, Audrey.

Audrey was born on April 7, but passed away two hours later. Being born almost eight weeks premature, Audrey's tiny lungs were not fully developed. Todd and his wife, Angie, had only spent a short time with Audrey before she peacefully passed away. It was a tough time for their family, and Amy told Rebecca she'd mention it to the guys in the group, but with the timing of a loss of a child, she wasn't sure her companions would be in a place to do a benefit for someone else.

Amy actually ran the idea of Josh's May 30th benefit by Todd and Angie, and it didn't take but a second for Angie to agree that Selah needed to help. "This mother is going through something much worse than what I just went through. I think you should do it, honey," Angie told her husband, Todd. It wasn't long before Todd and Allen Hall, the third vocalist in the Selah trio, took it one step further by donating all the proceeds from the merchandise sales from the evening of the benefit to Josh.

Turning Tragedy into Hope

As the trio has prepared for this very special pro bono concert, they have been thoughtfully planning out their musical set, making sure that the night feels hopeful and that Josh feels loved. And with a man on stage who has just lost his own child, the night will have a very special message from Todd Smith.

"Todd said he wanted to open up about what it feels like for a father to lose a child," Amy says. "For a man to have lost his child, it means so much more to him now. He knows what it feels like. It's a pretty special moment when he shares that in concert.

"When he sang his version of "I Surrender All" at a concert in Texas recently, he talked about Audrey. It was a very touching moment where you heard a man who really wanted his baby to be alive and, at the same time, he can totally surrender to God's will. It's a sad, but beautiful testimony. I know that's one of the major reasons he wants to do this benefit, so he can share his heart with others. No one knows the pain that a dad is going through better than another dad, so we're really excited to be doing this."

Amy adds that May 31st was Angie's due date, so the timing of the concert on that day will, most likely, be difficult for their family. However, she adds that being able to help another child in need will be therapeutic for them.

As Amy has had the opportunity to share in the death of her friends' newborn and now share in Josh's struggle with cancer, she offers this hope to others who are struggling. "I know this is going to sound really simple, but Jesus is still the same. When Angie found out that Audrey might die, she just kept saying, 'Jesus is still the same.' I know when we go through trials and hear a child is going to die, it's hard to really grasp it and understand God's will, but we have to remember that He's the same as yesterday, today, and He'll be the same tomorrow. We have to grasp on to the fact that He'll love us the same tomorrow, and no matter what pain we feel, He's the one thing that will never change. He will be our complete rock. I know it sounds simple, but it's so true."

 
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