Share Your Story Saturday: Dane
March 5, 2017
Dane | 3 | Hepatoblastoma
[Give us a brief medical history of your experience with cancer.]
So I’m writing this for my 3 year old son who was diagnosed at 13 months of age with hepatoblastoma. We had many issues with chest infections for months before diagnosis and it took 5 Drs to finally get antibiotics for our poor sick little man. Two months later he was still having a nasty cough which he would vomit up his morning bottles and green muck would be through it all. I work in childcare and Dane came with me two days a wk. he was sitting in the high chair and just randomly vomited, he did the same again at home that same night. I had to bath him as he was covered in it. I cannot to this day give a reasoning as to why I had a voice in my head say to me to feel his stomach. I got him to stand up in the bath as I felt his stomach. I felt a hard type lump on his right side. Nothing sinister came to my mind but I spoke to lady at childcare the next day and she said if I was concerned to take him to the dr. I rang that night and got in for the next day. The dr lay Dane on the bed and felt his stomach and said he could feel it. He ordered us to go straight to the women’s and children’s hospital which was an hour and a half away. We left asap and we’re sent to emergency. They did an ultrasound on our baby boy. We then were directed back to emergency where they wrapped him in a sheet with one arm out and drew blood from his arm while he absolutely screamed the ER down. My poor baby so hot and sweaty from fighting it and hating the pain. We were then sat down in the cubicle and told the words ‘we think your son may have cancer’. We were in shock and instantly fell apart as you could imagine. So then began our cancer journey. 4 days later we found out he had a tumour taking up 70% of his liver. port was placed two days later and chemo was to start the 23rd of December 2014. The first round our son caught Norovirus (gastro) and rhino virus so that made Danes first round completely horrible. Going from a chubby bub to a baby that only weighed 8kgs, a night in ICU his sodium levels got that low he was almost going to get brain damage. 16 days isolated in one room due to not wanting to infect other cancer patients. Was horrible. Dane had 4 rounds of chemo before he had his operation on April the 7th 2015. We were told the operation would last 2-3 hrs. Those 3 hrs ticked by and then 4, 5,6,7 and then 8. We kept asking what was happening and we were eventually told the tumour had wrapped around his bile ducts so it became a very intricate operation. One that has never been done before on anyone ever. Having needed to use part of his bowel and small intestine to replumb everything. He lost the whole right side of his liver and his gall bladder. Seeing our baby straight out of surgery was heartbreaking. So many tubes and a huge wound it was hard to see. The surgeons told us they were almost going to give up as it was very difficult to get it all. They persisted and they got every single piece of that disgusting tumour. Once Dane had recovered from surgery he completed another 2 rounds of chemo finishing his treatment on June the 5th 2015. Danes journey came with a lot of illnesses throughout and a lot of hospital stays due to neutropenia and viruses crippling his tiny body. We are so thankful that we were one of the lucky ones to have the chance to become cancer free.
[What things were hard for you when you went into remission?]
Dane has had liver issues with his levels over 500. So seeing a gastroenterologist for a while working out what was going on. They have finally normalised and gotten to a level which is still considered high but not alarmingly high. Other than that we have been bery lucky with Danes recovery post chemo. He has also had many appointments for his hearing. He has lost his high frequency due to the type of chemotherapy he received. Thankfully it hasn’t affected his speech at all.
[What things have you done to ‘Embrace Your New Normal’?]
We live knowing how lucky we are. We celebrate every operation date and every last chemo. We celebrate life so much more
[If you could share one piece of advice with someone who’s recently finished treatments and adjusting back to life, what would you tell them?]
Take it day by day. It’s hard getting your two-three monthly bloods taken and waiting for the results but it becomes less and less and life slowly does become what you used to know as ‘normal’ it just takes time.
Click here to share your story of cancer survivorship with us! It is amazing how much you can help others struggling with similar trials by speaking out about them. Such a big thank you to Dane’s mom for sharing her little guys story with our community!