Greer – Hepatoblastoma
On the 1st March 2023, our world as we knew it changed forever when we were given the news no parent ever wants to hear – that our 2 year old daughter had cancer.
Greer had been ‘off’ for a while but with really vague symptoms that could be put down to almost anything – lethargy, occasional vomiting, irritability, reluctance to have her nappy changed etc etc. Visits to the Doctors didn’t show anything sinister, and several times a UTI was suspected but gave a negative result.
A couple of days after her last Doctors appointment, my husband and I felt her tummy was a bit harder than normal above her belly button, plus slightly swollen so back to the Doctor we went, expecting to be sent home with no answers and even an eye roll for being over the top parents!
However, our GP suspected an enlarged liver so after a brief stint at our local ED department for an ultrasound and blood tests, we were flown down to Hawkes Bay Hospital for further testing.
Following numerous blood tests and another ultrasound, the devastating news was broken to us – that they believed Greer had a liver cancer known as Hepatoblastoma (which affects 1 child in every 1,000,000, mainly under the age of 5), and we were to be flown to Starship Hospital the following morning. I remember being completely numb as I tried to process this information. There wasn’t the sinking sensation or world falling apart feeling that I would have expected, just a complete numbness. I just remember staring at the Doctor as she was speaking and trying to process it all. It was only when she said it was normally survivable that I started crying, that the gravity of the situation finally hit home.
That night, after making heartbreaking phone calls to my husband, friends and family, I spent hours just staring at Greer sleeping, wondering how the heck our beautiful, sweet little 2 year old girl could possibly have cancer?
The following morning saw next level logistical planning as we tried to coordinate getting my husband and other daughter, Milan, out of Wairoa (where the access via road was completely cut off following Cyclone Gabrielle 2 weeks earlier), and down to Napier to meet up with Greer and I so we could all fly up to Auckland together. Luckily, we happen to have a wonderful friend who flies helicopters so he very kindly choppered Kirk and Milan down to Napier in time for them to board our hospital plane. (This was the first of many acts of kindness and we will be forever indebted to all our friends and family who offered unwavering support to us on this awful journey).
Upon arrival in Auckland, we were transferred via Ambulance to Starship where we no doubt had the glazed ‘just arrived and we are completely overwhelmed’ look which I’ve seen on the faces of countless other parents since.
We checked into Ronald McDonald House, and this amazing facility became our home away from home over the coming months.
The Doctors confirmed the original diagnosis, and following a CT Scan and biopsy several days later, we were also given the news that although the tumor was contained within the liver, it was unresectable so it was highly likely Greer would need a liver transplant. When we saw the scan of her liver, it was obvious that the entire organ was affected with the disease, so there was no option of just removing the cancer and leaving the healthy organ. Greer would undergo 4 rounds of chemotherapy in order to remove as much cancer as possible and stop the possibility of metastasis whilst waiting for transplant.
Within about 1 week of arriving in Auckland, Greer starting on her first round of chemotherapy, with her cycle being 21 days and various chemo drugs being administered days 1, 2, 8 and 15.
It was also at this stage Greer had an NG Tube fitted which would turn out to be an absolute saviour as she completely went off eating and drinking. Knowing that she was staying fed and nourished was one less thing for us to worry about. Plus it made giving medications so much easier!
Round one didn’t go well at all, with Greer having uncontrolled nausea and vomiting, plus at times an unexplained pain which would cause her to writhe round screaming and crying – it was heartbreaking to watch. She also became neutropenic on day 8, and this lasted until about day 15. (Neutropenia is when the body has a lower than normal number of neutrophils and therefore can’t fight infection.) She spent nearly every night in hospital, and her Dad and I wondered how we would ever get through the next few rounds.
It was during this time that we did the assessment for the possibility of Greer having a liver transplant. The week of assessment was absolutely full on, as not only were we trying to wrap our heads around this new world of chemotherapy and side effects, but now we also had to switch hats and start learning about everything a transplant would entail. I remember this as being an exceptionally hectic time, with an onslaught of information. In addition to this we were also trying to balance the needs of both our girls, one in hospital and the other at Ronald McDonald House, with Kirk and I tag teaming our nights in hospital, him trying to keep up with work remotely, and the seemingly never ending meetings with medical specialists, both from oncology and also from liver/gastro. Fortunately every single person we dealt with was amazing, and so very patient with my endless questions!
Luckily, once we started on round 2, it was as though someone flicked a switch and Greer seemingly sailed through with just a brief stay in hospital for antibiotics when she became neutropenic. Sure, she still had daily vomiting for the bulk of her cycle but it was usually only once or twice a day and nothing we couldn’t handle.
Round 3 was shaping up to be a similar story, however it was at this point that our oncology team expressed a need to step Greer’s treatment regime up from an Intermediate level to an Advanced level. This was due to many mitigating factors, but unfortunately it did mean she would more than likely end up with some degree of hearing loss due to one of the medications. This was a hard cycle to go through but in the scheme of things, her hearing unfortunately was a little way down the list of things to be concerned about.
Also, about this time, Kirk and I had to make a firm decision about which one of us was going to continue with testing in order to be a live liver donor for Greer. We were amazingly both a blood type match, so went ahead with having numerous blood tests carried out, expecting one of us to be eliminated. We received the news that the blood work for both of us was suitable, but only 1 of us could at this stage continue with testing. We both (for various reasons) felt that each of us should be the one to step up so after days and days of constant debate, we eventually flipped a coin – and Kirk won.
By now, it had been confirmed that Greer would definitely need a liver transplant, and although she was on the donor list, she was currently suspended as she would need to complete all her chemo rounds first, then ensure her counts were at optimum levels. We were also working really hard to help her regain the weight she had lost so she would be in the best possible shape before her major operation.
Round 4 wasn’t too bad and it was later in this round that Greer was activated on the donor list – everything was starting to feel very real!
However the chemo was starting to take its toll on Greer’s little body and she was admitted back to hospital with neutropenia around day 14. She ended up having 6 nights in hospital as she developed an abscess and it was during this time that both the oncology and gastro teams decided her transplant needed to be pushed back 1 week as her counts simply were not where they needed to be. This also meant she was again suspended on the transplant list.
As it turned out though, having the transplant pushed back actually ended up being a really good move as we could see Greer was getting her strength back, and her counts were really improving. It was definitely a strange feeling as she didn’t look sick enough to need a transplant, and to see her bouncing around and singing in the lounge days before her operation really threw us.
Still, we were well aware that without a transplant, the odds of her cancer being completely gone were exceptionally slim so it was an absolute necessity.
The day of transplant came round so quickly. The afternoon prior saw both Kirk and Greer admitted to hospital, with numerous visits from various medical personal, blood tests, and for Greer a chest X-ray and blood transfusion.
The next morning, my Mum arrived really early to sit with Greer, which allowed me to be able to get over to the adult hospital to see Kirk before he was taken to surgery, about 7.45am. He was feeling pretty good, albeit slightly nervous, but so pleased to be able to help his little girl in such an amazing way.
The wait until it was Greer’s turn felt absolutely endless. From memory it was after 10.30am by the time she was collected from her room and taken to the operating area. I donned a gown, hat and booties, and took her into the operating room. She was really upset when the mask was put on her face, and all I could do through my tears was hold her tightly and tell her how much I loved her. That was definitely one of the hardest parts of this whole journey. It is the worst feeling knowing that 2 of the people you love most in the world are going through such major procedures and all you can do is put your faith in the surgeons and their teams, cross your fingers and hope for the best.
I received a call about 1.30pm to tell me Kirks surgery had gone really well, and by 3.30pm we were sitting with him in recovery. He looked amazing, and when we arrived he was chatting to a nurse about rugby! He was moved through to HDU where he spent the night before being moved to a ward for another 4 nights. His pain was definitely less than he was expecting, however he did experience nausea for a couple of days, and struggled for weeks to get more than 2 hours sleep at night!
Greer’s surgery took about 8.5 hours so by 9pm we were able to visit her in PICU. Although she was surrounded by machines, I was prepared for this and somehow it didn’t freak me out as I had expected it would. We spent some time with her before leaving for the night, only to return in the morning and find her wide awake and surrounded by a room full of people doing morning rounds! She couldn’t speak as had the breathing tube in her nose, but was trying to mouth words to me.
Her tube was removed fairly quickly, as were her other lines, various medications were discontinued and by the next morning, she was transferred up to Ward 26B. Her recovery following her surgery was incredible, and by day 10 she was allowed back to Ronald McDonald House.
We are now 6 weeks post transplant and it is amazing to see how well she is doing. In that time, we have been having blood tests 3 x per week, and for the most part her levels have been really stable and to date there has been no sign of rejection - fingers crossed! In that sense, it really has felt like a dream recovery.
Although she hasn’t had any of the normal complications she somehow did manage to get Influenza B, then we all contracted Covid – how is that for terrible timing!
In addition to all this, Greer also recommenced chemotherapy 3 weeks post op, so this did throw her blood levels and counts out. Taking all that into consideration, aside from a runny nose and a brief stint in hospital due to being neutropenic and being given anti viral meds for Covid, she is full of energy, running around after her big sister and exploding with new vocabulary! It’s hard to believe she has gone through such a major, life changing surgery!
She will have 2 more rounds of chemotherapy to ‘mop up’ any rogue cells, and then provided both teams are happy with her, we may finally be able to go home and start living a somewhat normal life.
As parents, this has been one of the worst experiences we could ever go through but we are incredibly grateful to absolutely every person who has supported us along the way. Both the Child Cancer Foundation, and the IDFNZ have been amazing with their support and it is organisations such as these that help make this journey just that little bit easier.
Every single person we have met who has been involved in Greer’s case has been so amazing, and we feel incredibly blessed that we have received such an exceptional level of care and dedication.
Although we know Greer will always be a ‘medical kid’ and we can’t ever feel complacent that the worst is behind us, we feel optimistic that she has been given the best opportunity for a wonderful future, and we are determined to live every day to the fullest.