Hepatoblastoma is a rare form of liver cancer most often diagnosed in very young children under the age of three. It is most often occurs in boys.
It can easily go unnoticed and most symptoms don't appear till the tumour gets so large the abdomen becomes distended, like in Finn's case.
These signs and symptoms are more common after the tumor gets big.
- a painless lump in the abdomen
- weight loss for no known reason
- loss of appetite
- nausea and vomiting
Finlay has never been a big eater of solid foods. Not since we very first started him was he really interested in actually eating. He was a big 'boobie' (breastmilk) fan and initially I thought he just preferred that over food. As he got older and I tried ways to encourage him to eat I did become concerned over his lack of eating foods that required chewing and swallowing. He loved puree's and yogurts but would often gag on even his favourite foods. I got him a referral to a speech pathologist due to his older brothers (Harrison) verbal apraxia I felt strongly Finlay may have had oral apraxia which is similar to verbal apraxia but involves the mechanisms required for eating. We know now is lack of interest in food was likely due to his liver tumor.
Finlay was also seeing a physiotherapist since 15 months. At 18 months he still was not walking. He was diagnosed with low muscle tone and hypermobility and this was our reason for him not walking. It is likely his tumor was affecting his progress in this area also.
Other notable aspects of Finlay's history include,
- kidney dilation at 19week anatomy scan. This was followed up at 34 weeks and again when he was 6 weeks old when he was cleared. The dilation had corrected itself.
- Finlay was the only one of my three that had jaundice as a baby. He required 24hours in special care under lights to rid his body of the bilirubin build up.
- Family history of polyps. FAP is a mutation of the APC gene. The APC gene controls cell death. When it has a mutation, cells, particularly those of the digestive tract do not multiply and die off like they should. This leads to polyp formation. It is also linked to hepatoblastoma in children. This is something we will need to get genetically tested for .
Children with Hepatoblastoma have very high levels of Alpha-fetoprotein (AFP). AFP is a substance released into the blood by the liver. All newborn babies are born with high levels of AFP which decline over time.
In Hepatoblastoma instead of decline they increase. A healthy level of AFP is under 5 with most of us having levels under 2 and 1.
Finn's AFP level at diagnoses is 630 000!
The AFP levels are a good tumour marker and we will be able to see how effective the chemotherapy is by how much his AFP levels drop.
Finlay's Hepatoblastoma is at stage 4 (the highest stage) meaning it has spread to his lungs and he has Pulmonary metastasis. It is considered very high risk and is being treated very aggressively.
He will receive 7 rounds of chemotherapy initially. Each round he will receive 5 different types of cancer killing chemo's being pumped into his fragile body every day for 5 days. He will have two weeks off to gather enough strength that he can before being hit with another round. All up he will have 7 different chemotherapy drugs. He also needs to receive a vast variety of medications from anti sickness, to antibiotics to heart meds to counteract the negative side effects from these drugs. It's a pharmaceutical nightmare.
He requires continuous Nasal Gastric feeding allowing his stomach to tolerate the feed. We've had to learn how to check it is position correctly, aspirate it, flush it and hook it up to the pump.
We have to do regular mouth care to help prevent mucositis. Mucositis is very painful inflammation and ulceration of the mucous membranes lining the digestive tract as a result of the chemotherapy. We also have to take extra care of his nappy area as he is still in nappies.
The most concerning side effects for Finlay's treatment will be hearing loss, kidney damage and long term heart disease. Of course there's also a chance the cancer will return or he'll get a secondary cancer.
The hope is after these 7 rounds the tumor would have shrunk to a size they are able to operate on, and his liver will be resected. If this is not the case he will need a liver transplant. I've been told he only needs one quarter of his liver left as the liver is regenerative and it will grow back. How cool is that! After his surgery he will get another three or so rounds of chemotherapy to make sure that it is dead and gone.
If this all goes to plan then he will need to rehabilitate. Grow stronger, gain back muscle control and strength, learn to eat again, learn to walk and possibly crawl. He will very likely need hearing aids.
It's a frightening and scary time for our family. It is one hell of a nightmare marathon and we couldn't do it without you all cheering us on, giving us the strength and pushing us towards the finish line. Thank you so much for being here and sharing in Finn's story and sending us love!
You can read more about Hepatoblastoma on this link http://emedicine.medscape.com/article/986802-overview#a0156