COLORADO SPRINGS, Colo. — They coo soothing words through gritted teeth, over the coughing and the writhing and the desperate cries of “Ow!” and “Please stop!” from their 4-year-old son on the hospital bed.
Joseph and Amanda Salmoiraghi know they’re doing what must be done. This has been their life for the past 1 1/2 years.
But that doesn’t make it any easier.
“Why are you hurting me?” shrieks Joshua, his face slick with tears that no longer have eyelashes to keep them in check.
“Come on, Joshua, I know you don’t like this part, but this is the last …” says Amanda, as she and her husband hunker over Joshua’s body, pinning his limbs and holding down his hands, so the chemo catheter attachment can be removed from the port implanted in his chest.
A few moments later, the cath is out, the battle over. Amanda rubs her son’s shoulder and says, “Good. Remember what’s next? Now you get to ring the…”
“The… bell…” Joshua croaks, his voice spasming as the panic recedes.
“That’s right,” says Amanda, “the bell.”
The Warrior Bell hangs on the wall by the nurses’ desk down the hall at Children’s Hospital in Aurora. Every kid who completes treatment here gets to ring it before they go home for the final time, and Joshua has been looking forward to this moment since he began chemotherapy in April, four months before.
Thinking about it has clearly perked him up. Without the mop of thick brown hair, without eyebrows, there’s nothing to camouflage his emotions. His countenance seems to go from despair to joy with no stops in between. Right now it’s moving in the right direction.
Amanda swipes a fat tear from her son’s cheek and tells him he’s a brave boy, and “almost done.”
This time, she prays, it is the truth.
Joshua Salmoiraghi loves baseball, Legos, superheroes and anything chocolate. He is 3 feet, 10 inches tall, 44 pounds, and all little brother.
“He punched Timothy in the nose the other day,” says Joseph. “If he’s feeling up to it, he’s just as rowdy and pissy as his brothers, and he can snap back with the best of them.”
Joshua was a healthy baby but as an older toddler began suffering chronic stomach issues, constipation and fevers. He was 3 in June 2017 when he was diagnosed with Wilms tumour, the most common type of childhood kidney cancer. After surgery to remove a tumour and one of his kidneys last year, he underwent what initially was thought to be a successful round of chemotherapy and radiation. Soon after, on Dec. 30, he was declared to be in remission.
The following month, however, as the family prepared to move from California to Colorado Springs for Amanda’s job with the Air Force, they learned that Joshua’s cancer was not only still there, but also was at stage 4.
He would need more treatment, with stronger drugs.
The Salmoiraghi family’s journey with cancer wasn’t over.
This time, the meds meant to control the post-chemo nausea wouldn’t work as well. This time, there would be more fevers, more ER visits, more transfusions, exhaustion, strained budgets and stress, because this time everything was different.
“Be careful not to kick mommy’s tummy,” Amanda reminds her son, as she leans over to untangle his chemo catheter tube as he plays in the hospital’s recreation room during a treatment in August. “Remember, there’s a baby in there.”
Joseph is the softie and the sci-fi nerd, Amanda the serious one and scientist. He roots for the Yankees; she, for any team playing against the Yankees.
Theirs is a stereotype-defying match made 12 years ago at Buckley Air Force Base in Aurora.
He was fresh out of the Air Force, had signed up for the Navy Reserves and was leading music at the chapel when he met the pretty New Jersey native with long brown hair, a graduate degree in engineering from the Air Force Institute of Technology and a job working on the base’s missile warning system. He got her phone number at the monthly chapel luncheon, but then found out she had a boyfriend so was “kind of bummed.”
A week later, he learned there was, in fact, no boyfriend, so he asked her out. She accepted thinking they were “just going out as friends.” A night of swing dancing at the Mercury Cafe in Denver changed her mind, and both their lives, forever.
“It was one of those things. As Christians, basically that night we just knew we were supposed to get married,” Joseph says. “And we did, a month later.”
But not before a premarital counselling “crash course” with a church chaplain and a discussion about how they both wanted a “pretty decent-sized” family.
“We knew we wanted kids, but we didn’t put a number on it or anything,” he says. “We’d figured we’d just let it happen.”
Two years later, Benjamin happened, and two years after that, Timothy. Baby Joshua arrived Dec. 23, 2013, and as soon as he was old enough for adventures, that’s what the family did — travelling, camping, baseball, water parks.
Looking back on those times now, the Salmoiraghis are glad they could give their son — their sons — those experiences. They also know it means everyone realizes precisely what they’re missing.
Childhood cancer doesn’t only affect health. It robs childhood’s watershed moments.
“There’s a lot of things Joshua can’t eat or do that are normal for a kid his age,” Joseph says. “He wishes he could do things, and he kind of understands why he can’t, but it still kills him when it’s something he really wants to do and we have to say ‘No.'”
Joshua also likes ninja warriors, mac and cheese and licking the spoon when mom bakes, especially when his brothers aren’t home and he doesn’t have to jockey for pole position at the kitchen counter.
He also loves to swim. Or at least, he used to.
“Joshua grew up in California. One of his favourite things to do is go to the pool, and he can’t do that anymore because he’s immunocompromised,” says Joseph. “When his counts are low, we’ve got to be really careful about him getting an infection.”
That means avoiding exactly the kinds of places Joshua most wants to go.
Chemotherapy works by destroying rapidly multiplying cancer cells, but it also damages healthy cells in the body. The three-week intervals between each of Joshua’s six chemo treatments allowed blood counts to replenish. When those are low, he is especially vulnerable to catching communicable illnesses, so public pools, baseball games, hotel rooms and the zoo — the place where he could see the real tiger that was his top Make-a-Wish request, edging out the backyard ninja warrior course he’ll get in January — are simply too risky.
“When his counts are up high enough, we’ll go to laser bowling or something, but again it stinks, because usually when he wants to go is when his counts are too low,” Joseph says. “It’s impossible to predict. You’re living day to day, and really hour to hour.”
Any excursion must be one that can be made, or cancelled, at the drop of a hat, with a babysitter waiting in the wings and willing to move, or not, on a dime.
“We don’t know he can be watched by a babysitter and be OK until hours before, so that makes it tough to find a sitter,” Joseph says.
Blocks of unscheduled time, often, mean disappointment all around.
“The kids will say, ‘It’s summer. Let’s go do something. Let’s go to the pool.’ Then Joshua says, ‘I want to go,’ and I have to say, ‘Good job, guys, because you know he can’t go to the pool.'”
The older boys know their brother is sick, but they — especially Timothy — sometimes struggle with the reality of its impact on their lives.
“So much focus has to be on Joshua just out of necessity,” says Amanda, about a month after Joshua began his second course of chemotherapy. “Like on Saturday, Timothy was, like, ‘Why do you always have to go to the hospital?'”
He understands his brother is sick, but at age 7, she says, “It’s just really hard on him.”
There are the breathless, too-busy-to-think times, the hours on the road, driving to Aurora and back, managing and swapping child-care duties and making sure someone’s always there to spend the night, for the three days — sometimes longer — Joshua stays at the hospital while receiving chemo.
“When we were living on base in California, there was always someone, a neighbour, to take care of the kids,” Joseph says. “We just got here, and we don’t live on base. So that’s definitely been a big difference.”
With Amanda’s full-time work schedule, not to mention the burgeoning pregnancy, “there are many nights she gives me a hug and she’s just leaning on me because she’s so tired,” says Joseph, who also has had stretches of eternal days and nights that left him so tired he was physically ill.
Even in the midst of all the chaos and near-collapses, there were some experiences and watershed moments of childhood and parenthood that cancer couldn’t take away.
At the start of his chemotherapy in April, Joshua asked his mom to help him learn to write his first name, so Amanda spelled it out in big letters on a piece of paper for him to copy. He tried and came arguably close on a few letters.
By August, he could write it perfectly, which he did, in blue paint on the wall of the children’s ward on his final day of treatment. He also added a handprint and was feeling perky enough that when someone brought up the possibility of a butt print, it was a struggle to change the subject.
“He also learned to say his name right, where he used to switch his middle and last name,” Joseph says. “Now, it’s ‘My name is Joshua Michael Salmoiraghi, I need a transfusion.'”
Or, as the case may be, “My name is Officer Joshua Michael Salmoiraghi.”
Days before his second, six-month round of chemotherapy was to begin, Joshua was sworn in as an honorary officer at the first such ceremony ever at the Colorado Springs Police Department.
“I thought it was just going to be give him a badge, throw him in a car and let him ride around for a while,” says Joseph. “Instead, it turned into a whole day of fun for him. He definitely fell asleep after that day.”
Some of those officers attended a second celebration honouring Joshua that drew dozens of friends and family to Aurora on Aug. 19:
His ringing of the Warrior Bell, signalling he was done with chemo.
The worst part of Joshua’s treatment was over, but he still had a course of radiation to go before the family would learn whether his cancer had been driven into remission.
On Sept. 24, he sat on a hospital bed at the University of Colorado Anschutz Medical Campus oncology centre, in Aurora, waiting for it to begin.
A month out from the end of chemo, his skull was shadowed with new hair, and his eyebrows and lashes had started to grow back.
“He’s my little peach,” says Joseph, scrubbing his son’s head playfully.
The radiation is intended as a second line of attack against any cancer tissue that remains. If the disease can be forced into remission, and stays that way for more than a few years, odds are it won’t recur, says Joshua’s radiation oncologist, Dr. Brian Kavanagh.
“There must be follow-up long term, for a return of the cancer or delayed impacts of any of the therapies used to fight it, (but) we do have every hope and expectation that he will reach teenage-hood, adulthood and beyond,” says Kavanagh.
A CT scan a month later, on Oct. 24, showed that Joshua’s cancer was in remission.
After almost two years of having to live in the moment, the Salmoiraghis could start looking to the future and making plans, for birthday parties and movie theatres and bunk beds for Joshua and Timothy, to free a room for the nursery.
Elijah Thomas is due in January.
Priorities are bound to shift dramatically, once again, when he arrives. But this family is used to change. For now, for the holidays and the few remaining weeks until the baby is born, they’re making up for lost time.
Last Sunday, they celebrated Joshua’s fifth birthday at Fort Carson’s indoor recreation centre, which has a “splash pad” pool with a fountain, slide and water levels no higher than his shoulders.
Joshua had been on his way to learning to swim when he got sick.
“And he used to be fine with being in deeper water with a life jacket, but not now that he’s been out of the water for almost two years,” says Amanda.
During an October trip to Cheyenne and visit to the F.E. Warren base pool, Amanda had to retrieve him after a plunge down the slide, into deep water, made him panic.
“It’s been so long since he could do this,” she says, looking on from a deck chair as her husband and three boys splash and play with pool noodles. “He’ll learn.”
Joshua’s hair has grown back a slightly lighter shade of brown. He looks like a shorter version of his brothers, who all look like their dad.
At the beginning of his treatment, Amanda began collecting and stringing together glass Beads of Courage that represent milestones in his cancer journey. There’s still one more jewel to add — surgery to remove the internal portion of the port in his chest.
She estimates the multiple garlands of beads measure maybe 10 feet.
“When you look at it, overall, it is kind of overwhelming. You don’t really realize how many little things there were, how many little things and big things he went through, until you look at it like this,” Amanda says.
Someday, she said, perhaps her son can use the beads to better understand his own story.
“He can look at this and know how tough he was when he was just a little kid,” Amanda says. “I also don’t want him to forget that good things happened, too.”
Information from: The Gazette, http://www.gazette.com
Stephanie Earls, The Associated Press