Our fair haired hero is fighting Stage 4, High risk, Hepatoblastoma www.facebook.com/friendsoffinlay

Thursday, 5 March 2015

How Childhood Cancer came into our lives

Childhood cancer is not something I ever imagined; that anyone ever imagines will come into their lives. What a bastard of a disease to affect our most innocent. It really did sneak up and grab me by the throat. Completely and horrifyingly so unexpected it was impossible to catch a breath for awhile.
Our little boy looked so healthy. He's got the most amazing beautiful sparkling blue eyes, the glowing kissable cheeks and a healthy amount of squishiness. He was our little roly poly bubba. A gentle placid soul with the most infectious giggles you've ever heard. A true sweetheart.
As a family we'd had the most enjoyable summer holiday period. It was full of fun and quality family time. We'd spent time with close family and friends and been on a family camping trip. I'll forever value the carefree, safe and blissful moments of this time. The time before everything we knew changed. Before our world turned dark and frightening and unknown.
Finlay on Boxing Day 2014
Finlay Jan 2015
Nothing was amiss till the Australia day long weekend. We spent lot's of time swimming in friends  pools and down the beach. Finn was a little more grumpy than usual and was off his food a little more than normal. He had canine's pushing through so I put it all down to teething. He had no fevers, no cough or sniffles, no sign of any illness or that anything was wrong. However, I noticed as he spent lots of time in his swim nappy that his tummy looked a little more distended than usual. He was always my roly poly baby with lot's of delicious chubbiness. He'd always had a big belly. We loved his big belly, it was the perfect spot for tickles and kisses! This time his belly looked slightly uneven and when I felt it, he had a definite firmness on his right side compared to his left. It's difficult to describe but it did not feel like a lump it felt hard and swollen. I thought perhaps he had swelling from a bump on that side although he was not bothered at all by anyone touching it and pushing on it, it was painless. I also considered that due to Harrison's severe constipation issues in the past that maybe Finlay had a bit of a build up in his bowels. Regardless it felt unusual enough for me to make a doctors appointment as soon as the surgery reopened after the long weekend.
I took him to our family GP (general practitioner)  on Wednesday 28th Jan 2015 and honestly expected to be told that it was fine and normal. I've always erred on the cautious side with my children and have taken them to the doctors so many times to be told that they are fine. I have a mind that tends to 'worse case scenario' so much so that my husband has nicknamed me 'worst Kate scenario' so I had convinced myself that I was being an overprotective parent again. The GP was lovely and agreed that there did seem to be a firmness in the liver area. She scheduled an abdominal ultrasound for Finlay and we were lucky there had been a paediatric cancellation that day so he was able to have his scan straight away.
The ultrasound was done at Joondalup hospital and I was starting to feel really nervous. I kept telling myself that he had a build up of poo and that was all however I must admit my mind was worst Kate scenarioing and I was thinking, 'what if it's a cyst or growth?' 'what if he needs surgery to remove it?' That was the worst I could bring myself to consider, no one expects their perfectly healthy baby to have cancer. That's not even possible!   
The ultrasound technician was super sweet with Finn. It wasn't long into the scan when she left the room to grab an assistant. She told me it was an involved scan and it would take awhile to get all the required measurements. The assistant was needed to help get Finn to stay in all the required positions. Finn was quite wriggly as to be expected of an 18month old so I thought that was fair enough. It was a looooooong scan. They rolled him this way and that way. They both chatted with me throughout about Finlay's hair, his eyes, my other kids, the weather etc etc you know the usual stuff. After the scan the assistant left and the technician casually said she was going to run the results past the paediatric doctor. All of my kids have had ultrasounds before so I knew this was standard procedure, I wasn't overly concerned.
She was gone a loooooong time. A very long time and I did start to panic slightly- I was worst Kate scenarioing! She finally returned with a youngish nervous looking Paediatric doctor. He introduced himself, I don't remember his name, I don't remember anything from this point very well. Things were starting to go fuzzy and my only real memory is the pounding of my heart sending shockwaves throughout my body and the sound of my heartbeat pounding in my ears.  I know he did take a look with the ultrasound himself. It didn't take him long. Then he looked at me and said something along the lines of "Finlay's ultrasound is abnormal, there is a large mass on his liver. We have spoken with your GP and they will see you immediately to arrange further tests at PMH (Princess Margaret Hospital). He will need a CT scan to have a better look and a biopsy of his liver taken. Are you right to go straight back there?" I must of nodded or replied and the sweet ultrasound technician walked me to the car asked if I was ok to get to the doctors. She said something about good on you for getting it checked out. I couldn't find any words. But she hugged me. The ultrasound technician hugged me. I would like to find her and thank her for being so kind that day.
Back in the car I tried to slow my breathing. Ok so there is a mass, that's ok they'll get rid of it with surgery. These things are likely to be benign in children, don't panic this will be ok, they'll get rid of it. I rang my husband. It was about 3pm by now. I told him he had to leave work now. He did.
At the GP's the doctor we had seen earlier had left and so we saw another lovely doctor who had seen my kids in the past. I do remember her ringing an Oncologist at PMH and I kept thinking, why? why are you speaking with an oncologist that young doctor has it all wrong, this is some kind of mistake, this really isn't happening. She told me to go home and pack a bag for the hospital and that the hospital would ring me. Ok, so it is happening but it's going to be ok, my baby isn't sick. The hospital will sort it all out for us, just don't panic!
On the drive home I got the phone call from the hospital. I've got Bluetooth, I answered. The hospital told me that there wasn't anything they could do overnight, by now it was about 4.30pm, and to come in the next day.
The next day, Thursday 29th Jan, felt like eternity. On the way into Princess Margaret, we stopped by Joondalup hospital to pick up Finlay's ultrasound report. I probably shouldn't have read it. I had to rush straight to the bathroom, I felt physically sick. It was very difficult to read what had been discovered on the ultrasound in doctor speak.  I was beside myself and the whole day was beyond frustrating. There was lots of waiting around and not much action, no one seemed to be doing anything and I couldn't understand the lack of URGENCY, my child could have cancer- someone please do something!! The doctor we did see asked us if anyone had mentioned çancer' to us yet? I replied that no, nothing official had been told to us but that I had read the report. It was then he told us about Hepatoblastoma. But of course he could not be diagnosed till the official testing had been carried out. He also very kindly told us that he did not operate on livers and unfortunately the liver doctor was unavailable till Monday... if we were able to get in to see her!!?? He did arrange a CT for scan for the next day but again, he told us that if another more critical emergency presented then Finlay would be bumped off the list. Gaaahhhh, I'm a placid person I really am but I wanted to shove the IV pole firmly up his arse! It felt like every thing was going so slowly and I just wanted them to do something. The Junior doctor did try to assure me that Finlay was high priority but at the time it did not feel like it.  Finlay had bloods taken and was sent home again for the night.
Friday 30th January. Thankfully his CT scan was not postponed and it went ahead. It was a long day of fasting for Finlay as his scan was done under a general anaesthetic. We were all highly emotional but he handled it like a trooper. Also something amazing happened, the unavailable  'liver doctor', came and found us, sat down with us, reassured us and told us their plan for Finlay, they had a plan! I felt much better, she went through his initial blood results and explained that at this stage there was some indication it may be Hepatoblastoma but until they did the biopsy and investigated the mass under a microscope they couldn't be certain. She explained the procedure on taking a biopsy of the liver and that in Finn's case he would need laparoscopy surgery or a full incision due to the size of the mass. She made us feel comfortable about taking him home for the weekend by explaining why nothing else could happen till the CT scan was analysed. She expressed that they were moving as fast as they possibly could to enable Finn to start treatment as soon as possible. Forms for surgery were signed and instructions for preparing Finlay for surgery were given and because Finlay was in such good health with no symptoms apart from the distended abdomen we were able to go home after he recovered from his general anaesthetic.
I was definitely on auto pilot mode that weekend. Like a robot, I just wanted to be prepared. I went shopping to get Finn some new hospital suitable clothes. I needed to keep as busy as possible.
Finlay Monday 2nd Feb 2015 7.30am
Before biopsy surgery and day of Diagnoses
Monday 2nd February. We arrive at  Princess Margaret by 8am. We are ushered into an office by Liz Whan (the liver surgeon) who explains that there will be some other Doctors joining our meeting this morning and they were on the way up. She talks more in depth about how she plans to do the biopsy, were the incisions will be, how much liver she will take (quite a fair bit due to the size of the tumor), how long it will take. She then says that she will need to make an incision in his neck for the port line to be inserted and one on his chest to place the button. We had not yet been told about him having a port line so were confused. Luckily the other Doctors arrived in the room. They are introduced as Paediatric Oncologist Dr____ and Senior Oncologist liaison Nurse ____. They explain about the port line, showed us diagrams, gave us one to hold, told us it is so they can administer Chemotherapy, hang on chemotherapy? Yes your child does have Cancer, the biopsy will tell us exactly what type of cells are present in the tumor but yes your child does have cancer...   cancer? cancer? Yes, liver cancer... cancer... it is quite rare... excuse me what, cancer? You know this for certain already? Yes cancer... a form of childhood cancer... it has spread... it's on his lungs... cancer... stage 4... cancer, what? cancer... how? there is no known cause...  high risk...  why? nothing you or anyone could have done...  cancer... treatment will be aggressive... cancer... we will start this week... cancer... cancer... do you have any questions... cancer... cancer... cancer... sorry where has the floor gone... just what... what's happening... cancer...
Finally that retchered meeting is over and we are delivered to admissions so that Finlay can be admitted. The liaison nurse stays with us. She brings files on Cancer and a book, I can see the words Childhood Cancer and I know she wants to give them to us. I don't want them, I can't stop staring at them but they disgust me, I want to grab my baby and run far far far away from this hospital. I hate it here. I don't want anyone to lay a hand on my precious boy, I can't quite work out how I came to be here and what I should do next I feel stuck like my mind is not in control of my body anymore. I am a robot they are guiding. We are sent up to surgery. I let the nurses take ob's on Finn and weigh him. I hold him, even though he is fighting so hard to get to my boobs, he can't have any of my precious boobie milk, he needs to fast for surgery. It is truly torture waiting. I function just. I hold my baby as the gas sends him off to sleep for the second time in three days. He goes off peacefully and I kiss him gently on his cheek and I tell him I love him more than all hairs on all the bears. I leave him there in the cold, freezing cold sterile theatre with a bunch of eyes peeking at me through safety glasses, their bodies covered in gowns and their faces with masks. In my head a beg them to please be gentle with my baby as I walk out. I'm not even crying. I am a robot. There is another mother sobbing her heart out as she leaves her child yet I can't muster up one little tear. I wonder what is wrong with me!
I am a robot.
Four and a half hours later and we are told our little boy is in recovery. I can go through, I can't get there quick enough. Someone switched me off robot mode and I move with the speed of an Olympic sprinter. Finlay is making a god awful noise, a horse growling kind of noise and it tears me to pieces. There's blood and lot's of it, the nurse holding him is drenched in it. I don't care that I'm wearing a white top I scoop my baby from her arms and nurse him, I offer him my breast yet still he growls and he bleeds. The sounds stops my heart beating. The nurse leaves, she needs to shower and change but there are a dozen more surrounding him and me. Some are holding his belly, applying pressure, one is telling me that he has had a blood transfusion so it's okay he's losing so much blood! Just make him stop bleeding please, I beg. They give him some strong pain relief and I physically feel his whole body relax in my arms. He goes quite, he is peaceful, they manage to get his bleeding under control, they apply more dressings and when he bleeds through that one they put another one on top! I take a minute to look around the recovery room. These nurses are all so very young too young for this kind of responsibility surely. But they work efficiently, they are calm and in control, they fix my baby from what those doctors did. I hold Finlay in my arms until his stats are stable enough that he can be transferred to the ward.  Another young and beautiful nurse comes to collect us and we are taken to the surgical ward 5c. Our room is directly opposite the nurses station. There are cords and leads coming out of him everywhere. He looks battered, he's swollen from the IV fluid, I feel like I'd handed him over to the lions to feed on. Oh my baby I will not let them do this to you again! How naïve of me, to believe I could protect you, to keep you safe from the evils in this world. What a goddamned fool am I?!  
Finlay Monday 2nd Feb 2015 7.30pm
Post surgery with port line, cannula's in both hands and one foot.

His nappy is dry, it was dry prior to surgery too. No one knows if he had a catheter during surgery or not. They'll keep an eye on it they say, sometimes it takes awhile for the bladder to wake up after surgery. Finlay sleeps, he cries, he cries and he sleeps. Hours pass and he is still dry. His heart rate is racing, his blood pressure is high. He is swollen with fluid. His bladder is scanned, it is full. The doctor is called. The doctor on call says to give him water to drink!! He is on IV fluids, he is refusing anything taken orally, he wont drink water, it would make no difference anyway. 2 more hours pass and no wee. Finn is very distressed and uncomfortable. The doctor is called again. He says try giving him a bath, I look at him in despair, are you serious, he has 3 cannula's, a portline, a stats monitor and a blood pressure cuff attached to him. He also has five incision sites from his surgery. He wants to avoid giving him a catheter and I do to, my boy has been through way too much already but putting him through a cool bath while he is so distressed, in pain, with everything attached to him is also too much for him to bear. The nurse is not happy about it, I am not happy about it. We use a small amount of water and pour it over his legs. He will not pee. We tell the doctor we bathed him. The doctor finally does the catheter then leaves. I'm happy not to have to see him again, he was horribly inconsiderate. By now a new day is beginning.
Tuesday 3rd Feb. Finlay remains on strong pain medication. He sleeps most of the day. His catheter stays in, his urine output is slow compared to the fluid going in. The surgeons are happy with his incision sites. The oncologist liaison nurse visits us again. This time she leaves the files and books. Today I take them eagerly, I need knowledge, I need facts, I need statistics, I need hope! She takes us on a tour of the oncology and haematology ward. I am in disbelief to be there. Finlay's primary oncologist visits,  she tells us that they want to start chemotherapy as soon as possible, as soon as he is discharged from the surgical ward by his surgeons we will be admitted to the oncology ward.
Wednesday 4th Feb. The surgeons visit again. They remove his catheter. He needs to wee on his own before they can discharge him. Finlay refuses to wee for four more hours! He is scanned and his bladder is full, too full! We trickle water over his legs. He holds on tight, till the doctor is phoned to reinsert the catheter, he holds on till  right before they are about to prep him, then he produces a golden stream so large and magnificent we all gasp with relief! Go Finlay! His bladder is awake. We are moved to ward 3b... our battle with cancer has begun!! And we will fight with everything we have... we've just gotta muster up the strength... we reach out to friends and family... and they come stampeding in the hundreds to stand and fight right by our sides. We settle into our new room, get as comfortable as possible, we could be there awhile and just like that we become a ward 3b family.
Thursday 5th Feb. We are the new kids on the ward. I feel the stares and the questions on the other parents lips, 'what does their kid have?' 'How did they find it?' 'is their story worse than ours?'
Maybe they were actually the questions on my lips?! 
Everyone on ward is perfectly friendly and welcoming, they seem so happy, full of smiles. I learnt quickly that it is functionally necessary to act happy and pretend to be positive on a children's cancer ward. The alternative is just to grim. I have read that it is the brains way of coping. If you felt the intensity of your emotions after news like this all at once you would just die. The body could not handle the enormity of it. Our brains are smart, they protect our hearts from unimaginable pain and hurt. I know this is true. I could physically feel my brain protecting me from the pain even though I knew my heart was breaking into a million pieces that no matter what will never be put back complete again!
Cycle 1 of Finlay's chemotherapy started this day. What a bitter sweet moment. This toxic medicine is what is going to rid him of this disease yet at the same time it will be poisoning his tiny body. It will make him sick, make him lose his sweet soft snow white hair and leave him weak and defenceless to viruses and infections. It is going to rob him of his perfect hearing, damage his kidneys and possibly his heart. His gross motor development will decline. It's all too much und unfair. What choice do we have?
Look after me my Mummy ~ Always and forever my Finlay
This is the end of our story to diagnoses but this is just the very beginning...
Thank you for reading, thank you for following, thank you for supporting us. This isn't a sprint, it's the biggest hardest scariest marathon of our lives. We need you cheering us on, please don't leave us alone to fight this xx

With Love Katey


  1. My heart goes out to you all Katey - thank you for sharing all this so honestly. We are all here cheering you and finn on, he is truly beloved and you are doing an AMAZING job in the midst of a truly sickening situation. I cannot imagine what you are going through but I know you are a wonderful mama to your boy xx

  2. Oh Katey. It is still so unimaginable that you guys are on this journey, but yet it is happening. You are so incredibly strong, even though I know your heart has been broken apart. Thank you so much for sharing your journey as I know that unfortunately, there will be others who find themselves on the same path as you and it will definitely help to read and know they aren't alone. As Kate said, you are an amazing mum. Your family are so lucky to have you. We are all here beside you guys cheering you on. Lots of love xo #teamfinlay