The joy was bittersweet for Joe and Emily Millward as they watched their second child, Isabelle ("Bella") breath her first breaths of life on May 2, 2006. Nearby they knew their older son, Joey, was breathing his final breaths after a valiant fight with cancer.
Joey passed away four days later after battling cancer for nearly all of his 20 months of life.
As Emily Millward recalls details about her son's life --— including his love for Cheetos and trucks of all kinds — she remembers the days following his September 7, 2004 birth when she began to suspect that something wasn't right.
One side of Joey's stomach seemed to "stick out" more than the other, she said. She figured, being a first-time mother, that she was worrying unnecessarily and if something were wrong, doctors would detect it during his "well-baby" checkups.
Still as Joey approached his three-month birthday, the Millwards decided they need to know for sure that everything was OK.
"We saw a different doctor and he felt Joey's belly and he said 'yes, there's absolutely something here,'" she said.
After a quick blood test to check Joey's hemoglobin, the Millwards were routed to Munson Medical Center for an ultrasound of Joey's stomach.
They received a call immediately following the ultrasound. Not only was Joey's hemoglobin extremely low, but the ultrasound also detected a mass. The pediatrician told them to get Joey to DeVos Children's Hospital in Grand Rapids as soon as possible.
The Millwards spent the next 10 days in Grand Rapids as doctors performed various tests, including CAT scans and bloodwork, before determining that Joey had Hepatoblastoma, an extremely rare form of liver cancer.
"It knocked us over when they said (he had cancer). We were naively thinking everything was going to be fine," she said. "It was just going to be some kind of infection that they could fix and we would be on our way. We really weren't thinking cancer."
That naivety was short-lived as they were quickly thrown into the world of cancer treatment which included frequent trips to Grand Rapids and daily injections administered at home.
Following the first round of chemotherapy, tests showed that the tumor, now the size of a grapefruit, was not responding. The decision was made to travel to Chicago for a consultation with Dr. Richard Superina, a doctor who specializes in pediatric liver transplants and tumor dissections.
On March 2, 2005, Joey went in for what was labeled "exploratory surgery" in order to determine whether or not the tumor could be removed.
Members of the Millwards' family gathered in the waiting room in Chicago and prayed together during the surgery. Expecting to hear something after about three hours into the surgery, the wait stretched to 12 hours before the doctor finally emerged.
"He said, 'I didn't think I could do it at first and for some reason something pushed me to do it. We got it all.' "
The Millwards had no doubt that what pushed him was the power and magnitude of prayers being said for their son, both in that waiting room and all across the country. Approximately one week before Joey's surgery, the Millwards started a carepage (www.carepage.com) that allowed them to keep a "blog" of Joey's illness and treatment.
"We will probably never know, this side of heaven, the number of people who were praying for Joey," Millward said.
Believing that Joey was now cancer-free, the doctors recommended follow-up chemotherapy to guarantee that Joey's body was totally free of any cancer cells. On June 3, 2005, Joey had his last chemotherapy treatment and the Millwards looked forward to a "normal" summer of family gatherings, something they had to avoid for so long due to Joey's susceptibility to infections and illness.
One day before Joey's first birthday, the Millwards got a bit of unexpected good news: Joey was going to be a big brother.
"I was a little bit scared," Millward said. "At that point we didn't know that Joey was going to relapse. For me, it was just wanting to be a good Mom and not being sure if you can love two children ... I didn't know it was possible to love someone else that much too."
That joy was quickly interrupted by the news in late September that Joey's cancer had returned. They returned to Chicago where Dr. Superina removed the left lobe of Joey's liver.
Following surgery, the doctor delivered more bad news. It was no longer Hepatoblastoma that Joey was fighting but rather a rhabdoid tumor, which is even more rare than Hepatoblastoma.
"There are about 20 documented cases in the world," she said. "It's known to be extremely aggressive and does not react to chemotherapy."
Warned that the next phase of chemotherapy would probably leave Joey very sick and without an appetite, the Millwards forged into the most "toxic" round of chemotherapy yet. Once again, little Joey proved the doctors wrong by tackling the chemotherapy with a smile on his face. And a bag of Cheetos in his hand.
"He didn't get sick," she said. "He didn't eat the first day. The second day he ate like he was fine. He wasn't going to let it stop him from eating."
Though Joey's spirits remained high, the cancer continued to spread throughout his body. When swollen lymph nodes were discovered, Dr. Superina went back in to take a look at what was happening in Joey's body.
The surgery showed that the cancer was deep throughout Joey's body. "Dr. Superina said 'if someone has a soul, that's where there soul would be located,'" Millward recalls.
With the heartbreaking news that Joey's body was now full of cancer, the Millwards faced one of their toughest decisions. "(The doctors) told us we could try something else, but that we needed to think about the quality of Joey's life," she said. "As parents that was a hard decision because you want to do everything you can do, but at what expense?"
The decision was made that Joey was done with the hospitals and they would try one last experimental chemotherapy at home. "When we got home, we found out that the FDA wasn't allowing the experimental chemotherapy to be used on children," she said. "We felt like that was an obvious door shut by God."
As the Millwards began trying to process the reality of Joey's situation, the arrival of Joey's little sister was fast approaching. With the help of their obstetrician, Dr. Deb Kurtz, the Millwards made the decision to induce on May 2, at 39 weeks. It was a decision that left Millward with mixed feelings and emotions.
"I still feel kind of guilty inducing," she said. "But as a Mom, I got to hold both of my kids in my arms ... both at the same time together. I'm so grateful for that one time."
Upon returning from the hospital, Joey's breathing began to change. "When our hospice nurse came she said, 'it's probably a couple of days at the most,'" Milllward said. "She just said to us, 'I think he knows you're going to be OK. Bella's here now and you'll be OK now.' I think she was right."
The Millwards believe strongly that God gave them Bella at the exact time he did for a reason. "Joe and I look at Bella and it is evidence that God knows what is best for us versus what we think," she said. "I was so scared that she was being sent in place of Joey. Nothing can replace Joey. God knows what we can handle and what we can't."
As difficult as it is to let Joey go, the Millwards feel that Bella, who bears strong resemblance to her big brother, is "like a tiny piece of Joey was left behind."
Throughout their grief, Bella has been a reminder to them that life must continue and that Joey would want them to be happy, she said. Millward says she always knew she wanted to be a Mom and that if God would allow her to stay home and be a Mom, that's what she would do. She added that she wants to be the same Mom to Bella that she was to Joey.
"I just don't feel like it's an option that life can stop," she said. "It has to continue. Bella deserves that same care as Joey did."
Editor's note: The September 27 issue of the Grand Traverse Herald will bring part two of Joey's story as the Millwards share how they plan to keep their son's memory alive.