When Jack and Lauren Ellis noticed swelling in one-year-old son Sam’s stomach, doctors told them it was most likely a virus.
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When taking him back in, for further examinations, the last thing they expected was to be told he had an aggressive cancer.
The result of that is that they have had to put their Benalla home on the market, relocate to Melbourne and will spend the next two to three years in and out of the Royal Children’s Hospital (RCH).
With another toddler, and a baby due in September, the couple is living a nightmare.
However there is one silver lining, with doctors telling them if the cancer was found just one week later, it would have been too late to treat.
“It started late last year,” Mr Ellis said.
“Sam’s stomach just looked bigger than usual. He ate really well. He ate more then Tommy, his older brother.
“We were young and dumb and we thought he just ate a lot and didn’t really think too much of it.”
However, around December of 2021 they started to feel something was not quite right.
“He wasn’t sleeping well,” Mr Ellis said.
“He was up every so often (throughout the night) and was very clingy during the day.
“We thought he was just going through a sleep progression or toddler phase.
“January came by and he was getting worse and by February he was getting up every half hour during the night.
“It was getting ridiculous so we saw a couple of doctors and they said it was a virus and gave us some Panadol.
“The last doctor we saw, she took a look at him and ordered an ultrasound and X-ray and they found there was a large lump on his liver. That was what was making his stomach so big.
“That was Thursday, February 24.”
Mr Ellis said their doctor phoned the next day to tell them what they’d found.
She had contacted RCH and told Mr and Mrs Ellis to expect a call on Monday.
“The Friday and Saturday night were pretty bad with him, and then Sunday we thought this is getting ridiculous, so we went straight to RCH on Sunday evening,” Mr Ellis said.
“As soon as we got to the front desk they put him up to number one, within five minutes of getting there he was in a bed and there was nurses coming in.
“They gave him Endone (an opioid pain-relief medicine) for his pain.”
That was the first good night’s sleep baby Sam had managed in weeks.
“On Monday morning the professor of oncology came down and he ordered about eight different tests,” Mr Ellis said.
“Some were blood tests. They had to get a biopsy. So they had to get a big needle into his liver. They also needed to get a bone marrow sample, which was a needle into the back of the spine.
“He had to have a tube that goes into his chest, which then goes up to his shoulder and down into his heart.
"That’s where they take all the blood tests from.
“He also had a nasogastric line put in. That goes through his nose down into his stomach. That is how they feed him and give him his medication.”
In his first week in hospital Sam had two general anaesthetics, several X-rays and had to be injected with a nuclear dye.
“That attaches itself to the cancerous spots so they can see where the cancer is,” Mr Ellis said.
After that test the gravity of Sam’s situation was uncovered.
He had cancer in his knees, his pelvis, his spine, skull, arms, liver and bone marrow.
“After that Dr Michael Sullivan (head of oncology at RCH) came in with five or six doctors and told us he has neuroblastoma cancer.
“And they’ve caught it just in time. They said one week later it would have spread too far.
"At that point he only had about eight to 10 weeks left if we didn’t do anything, so he was right on the brink.“
The staff at the RCH jumped to action and treatment began straight away.
“They gave him a blood transfusion. He’s had about six or seven blood transfusions now.
“He’s had a plasma transfusion. We found all this out on the Thursday and from Monday morning to Wednesday night they had done eight or nine tests and had done a two-year plan for him.
“They mapped out all his chemo treatments, all his radiation treatments all his meals and all the hospital stays.
“We can’t speak too highly of the RCH, they are absolutely unreal.
“All the nurses there, they treat Sam as one of their own kids, they look after me and Lauren.
“They ask if they can look after the kids so we can get an hour’s nap.
“The amount of care and compassion that they give, their confidence and know-how. They’re angels without wings.”
Mr Ellis said Sam started chemo the following day.
“That was the first round, and he’s just finished his third round today (April 21),” Mr Ellis said.
A round or block is three weeks. In the first week of a block Sam has two doses of chemotherapy each day. Then he is given two weeks to recover before starting the next block.
“The third round is pretty intense,” Mr Ellis said.
“He throws up a lot and it makes him feel really crook. He can’t hold anything down at the moment.
“But he’s coming home this afternoon (Thursday, April 21), which is fantastic.
“He has two weeks (to recover) then he’ll go back in and start his fourth round. After that they’ll try and operate.
“That’s when they’ll try and get the big lump off his liver, and any other spots that they can see they’ll try and get as well.
“Hopefully that will be the big spots gone, then they’ll try and get the rest with the chemo.”
Doctors told the Ellis family Sam was born with a rogue cell, and it would have been sitting dormant.
“They said it would have been growing since around December, which is why he started playing up around then,” Mr Ellis said.
“The lump in his tummy was so big that it was actually squashing his kidneys and it was pushing against the blood vessels and was stopping the blood from getting to his legs and feet.
“It was pushing up against his lungs and his rib cage. They said the amount of pain that he would have been in was why he couldn’t sleep.
“So the poor kid has been on death’s doorstep and in a tonne of pain for a good two to three months.”
The family initially decided to rent out their Benalla home, but after discovering they would need to be in Melbourne for the next two to three years made the tough decision to sell.
Working in the construction industry Mr Ellis does not have the option to come in for a day or two of work, then be off for several weeks.
So the sale of the property will help them to live day-to-day while in Melbourne.
“Because Lauren’s pregnant and Tommy has just turned three one of us has to be home and the other has to be in hospital with Sam,” Mr Ellis said.
“So by selling the house, that will fund us for the next few years. It’s only a house. It’s only a material possession. It’s much more important to concentrate on getting Sam better.”
While the couple is pleased they caught the cancer in time and is hopeful of a good outcome, the road ahead is not going to be smooth.
“They said the most dangerous part is when he goes into remission,” Mr Ellis said.
“When they finally give him the all clear, that’s when he’s been blasted with radiation and chemo for the last two years, that’s when his immune system is the weakest.
"If they’ve missed one or two tiny little bits it will take off with a vengeance and whilst it’s not game over, in most cases it’s a lot more serious if it comes back in remission.
“So the big thing is to make sure they get every little bit and hopefully when he gets in remission, he gets the all clear and we can move back to Benalla.
“All our family’s back in Benalla, mine and Lauren’s. And all our friends, and our church is there.
“You can go to the Pink Shop or the coffee vans and you know everybody, it’s a bit different down here.
“We can’t wait to move back but we’ll be here for the next couple of years, then hopefully we can bring Sam back all healthy and go again.
“Lauren and I are so thankful to God for being able to catch Sam’s cancer in time. God has been so good to us and has been with us every step of our journey.
“God has provided for each and every need so far, whether it be financial, finding a new home here in Melbourne, helping us get through, all the hospital visits and he has been all that we need.
“Our church in Benalla, the Independent Baptism Church, has been amazing with everything as well and have been a great source of support and encouragement, especially pastor Brenton Honeychurch and his wife Olga.
“Our families have also been amazing, they've all pitched in with helping us move everything to Melbourne, especially my sister Molly, she actually cancelled her nursing contract in Queensland to come back and help us pack everything and move.
“Our mums, Janet and Jane have been coming to Melbourne every week as well to help Lauren look after Tommy and Sam at home, and that help allows me to be able to go to work.
“God has been there for us every step of the way and will continue to be there for us as we continue our journey.”
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