It has almost been 1 year since Toby was diagnosed. During the past year I have been going over and over in my head how I felt when we were first told Toby had Leukaemia. I thought that getting it all out of my head and onto paper might just help me stop going back over it all so often, so here goes……….sorry about the length of this post!!!!
Saturday 23rd October 2010
Toby had been complaining of a sore leg and back on and off for a couple of weeks and it got to the point where he wouldn't even stand on his leg at all, so Bevan took him to the Doctors (I was laid up in bed recovering from having an Ovarian Cyst removed 6 days before).
The Doctor immediately sent Toby over to the Hospital where they did x-rays and scans but nothing showed up. He was then looked at by an Orthopaedic Surgeon who suspected a broken femur and requested another x-ray (ironically he did actually break his femur 4 months later on the Trampoline!!!!). The second x-ray also showed nothing. They then did some blood tests which showed there was some type of inflammation in his body, but they were unsure where or why and asked if we could bring him back the next day for more blood tests. He had a nasty cough at the time, so they thought it could have just been that or maybe a bone infection.
The Doctor also mentioned to Bevan that the blood results showed Toby’s white blood cell count was low or high (I can’t remember which now), but whatever it was I Googled it and found that a common reason was Leukaemia, to which I thought “whatever” but it was still in the back of my mind. I remember mentioning this to my Mum who said “No way don’t be silly, someone with Leukaemia is REALLY unwell and doesn’t have as much energy as Toby does”!!!!!
Sunday 24th October
My Mum and I took Toby back to the hospital for more blood tests which showed Toby's Inflammation Markers had gone from 70 the day before up to 200 (the normal level is 10 or under), they were still unsure why and asked us to stay in the Hospital for the night while they gave him IV antibiotics as a precaution.
Monday 25th October
I was sitting alone in Toby’s hospital room around morning tea time when Dr Phil and Nurse Rose came in. They each pulled up a seat and sat next to my bed. I thought it was weird that they had both come in.
I really don’t remember much of the following conversation, but they basically told me that Toby’s bloods were showing traits of Leukaemia and that we would need to go to Starship in Auckland first thing in the morning for further tests.
I do remember them saying that the bloods were “unusual” and weren’t typical of normal Leukaemia bloods and that the tests in Auckland would be to see what was going on. I took this to mean that it probably wasn’t Leukaemia, but that there was something else not quite right.
I tried so damn hard to be positive and not to cry because they were telling me “it might not be Leukaemia so try not to worry too much at this stage”. I felt my lip wobbling towards the end of their visit and when Dr Moore sat his hand on my shoulder that is when the tears started. Dr Moore left the room and Rose stayed with me for a little bit and gave me a huge hug. I remember asking her how long we would be in Auckland and she said “Best case then only days, but worst case then possibly months”. She went off to get me the phone so I could ring Bevan.
I turned and looked at Toby sitting on the bed behind me……so gorgeous, so perfect, so innocent and no idea what might be about to hit him. I cried and cried and cried. I remember wondering how long he might have to live – weeks, months? I hugged him so tight and blubbed “you poor, poor baby, why you”.
Rose brought me the phone. I didn’t know who to ring first – Bevan because this was about his son or my Mum because that’s who a girl calls when you need emotional support right?
I rung Bevan first and just sobbed, I can’t even remember what I said, but I know I got the word Leukaemia out. Seconds into my call to Bevan, my cellphone rung and it was Mum, so I had a phone on each ear telling them both what the Doctors said. I don’t remember much more other than crying hysterically and trying to talk through the tears.
Bevan came over to the Hospital. I remember him coming into the room, more crying and hugging, but I don’t remember what was said.
Bevan sat with Toby at the Hospital while I went home to pack for Auckland. I don’t know how I got home in one piece; I cried so much I’m surprised I didn’t crash. Walking in the front door to the home we had just finished building only 5 weeks before this was extremely hard – the perfect family home, but not a perfect family situation.
I couldn’t face going into Toby’s bedroom so I started with my stuff first. What the hell do you pack when you don’t know how long you will be away from home? I just started chucking stuff into a suitcase in a blubbering mess. My Mum rung to see how I was going – I broke down in heap (I even laugh now about the fact that while on the phone crying I put my back against the wardrobe wall and slid down it into a heap on the floor – it was like a Hollywood movie!!!!). I remember saying to Mum “I just love him so much” and all I could think was that I just can’t loose my baby boy. Mum said she was on her way around.
Just as my Mum arrived so did Bevan’s Mum. They both walked in together and I looked up from the kitchen to see them both crying, it started me off again and we both stood crying together in a group hug. The whole thing was so surreal.
I eventually made it into Toby’s bedroom to pack his stuff. All I saw was his cot, his soft toys and then my favourite photo of him snuggling into me only hours after he was born. Loads more tears :(
Again, I don’t remember much about the rest of the night, but it was spent at the Hospital.
Tuesday 26th October
Toby, Bevan and I were taken in an Ambulance from Hawke’s Bay Hospital to the Napier Airport where we boarded a little Air Ambulance plane. There were many more tears again as we said goodbye to Mum and Yvonne not knowing what the next few days would bring and when we would be back.
Driving from Auckland Airport to Starship Hospital was torture – so slow. Walking into Starship and finding our way to the top floor was daunting.
I remember walking out of the elevator and onto the 7th floor and seeing a sign above the door which read Oncology and Haematology. At first I thought “Ohhh my God, why the hell are WE going to the Oncology Ward??” But then I told myself that it was ok as we were here for the Haematology part of the Ward, not the Oncology stuff!!! Wishful thinking.
As we walked down the long corridor I looked into all of the rooms as we passed them. All I saw was sick looking kids with no hair. A scary and heartbreaking sight. I wished I wasn’t so nosey!!
Blood tests got underway immediately. We saw a Specialist and asked the question “How likely is it that Toby actually does have Leukaemia”. “Ohhhhh highly likely” the Specialist replied. This was a shock as we had high hopes that we would be told it was something similar, but not actually Leukaemia.
We saw a number of different Doctors and Specialists in the first few days. We sat there nodding saying “Ahhhhhhaa, yip, ok, yes”, but all the information went in one ear and out the other and I don’t remembered anything that they said. We were given booklets and things to read about what to expect and were told to learn it all ASAP. None of it made sense though as we hadn’t actually been through the stuff that we were reading about yet - it may as well have been written in Chinese!!
Thursday 28th October
Toby's test results came back to say that he had Acute Lymphoblastic Leukaemia (ALL) which is the most common form of childhood cancer. We were told that the cure rate for a child of Toby's age is approx 90% which was SO good to hear after having in our heads that our child may not live to see his 3rd birthday.
I was blown away at how quickly the Chemo was started - just 48 hours after we arrived in Auckland.
From that point on………
Toby wasn’t too keen on all the oral medicines that he had to take. It was frustrating watching him spit it back out at us. How do you explain to a 2 year old that if he doesn’t take his medicine he might die??
Daily finger prick blood tests were heartbreaking; as were the first couple of times he was put to sleep in Theatre. He got bored and frustrated being stuck in a tiny Hospital room for 2 ½ weeks, but I guess for a 2 year old boy on steroids he coped better than expected!!!
I was devastated when they told us that Toby wouldn’t be allowed to continue going to Parent & Child (playgroup) which he loved going to twice a week, could no longer go to public playgrounds, public swimming pools, supermarkets, shopping malls or any other crowded places and that he may not be able to attend Kindy.
I missed Sam like crazy. In the 5 years since he had been born I had only been away from him for a handful of nights. I tired to phone him every night and it would bring me to tears every time I heard his little voice say “Hi Mummy”. He had only started School 4 months earlier and it was awful not being there to help him with his homework, get him ready for School in the mornings and pick him up at 3pm and listen to the stories about what he had done that day. It really made me feel like a failure as a Mum :(
As scary as Starship was at first, it turned out a great place to be because of the support from the other parents whose kids were going through treatment. I remember a Dad telling me that at first I would wonder why other parents were smiling and laughing in such a depressing place, but that eventually we would learn to smile and laugh again and that we would be able to spot the “newbies” looking all gloomy and teary-eyed. He was right.
We were allowed to come home early November after spending 2 ½ weeks in Auckland. From the time we got home early November until early December Toby wasn’t himself at all. He was lethargic, wouldn’t walk, got a nasty cough and lost his voice (and couldn’t even cry properly), he didn’t laugh or smile and looked terrible as he was all puffy in the face from the steroids and his hair started falling out. It was absolutely awful to see – he didn’t look like my boy and he didn’t act like my boy. I was beside myself that for the next 3 ½ years of treatment this was what Toby was going to be like. I felt like I had lost him already. Luckily just before Christmas he picked up and we started to get the old Toby back (minus all that gorgeous blonde hair!!).
I went though many different emotions (and still do obviously!!!) - sadness, anger, guilt, depression. One emotion I wasn’t expecting to feel was grief - I wasn’t sure why I felt this way because I hadn’t actually lost anyone, but then I realised that I had lost something and that was my “normal” life. I was grieving for the things that I could no longer do with Toby as a Mum or that we could no longer do together as a family and for the time lost in my life waiting for appointments, staying in Hospital, sorting out medication etc.
Anyway, since then we have been through a lot of ups and downs, but the first few months were the worst and that is pretty much a summary what I remember from that time.
Most of you will already know how blown away I am at how well Toby has handled what has been thrown at him. He is one amazing little boy and if you didn’t know, you would never guess that he is having treatment for Leukaemia. That smile and that cheekiness remain even when he is feeling crap!!
Lastly I would like to say a huge thank you to everyone who has supported me in this journey – my awesomely capable husband (my rock!!), my tolerant big boy Sammie, my fantastic family, great friends, Staples Rodway (Bevan’s work) who have been so understanding and generous, my new friend Shannyn and the team at the Child Cancer Foundation, the awesome Doctors, Nurses, Play Therapists and all the other staff in the Children’s Ward at Hawke’s Bay Hospital and Starship Hospital, the staff at Ronald McDonald House, our super supportive community and everyone who has passed on their best wishes, thoughts, prayers and offers of help. This journey would not have been made that little bit easier without you all. Thank you so much from the bottom of my heart xxx
