21 days ago, my heart shattered into a gazillion pieces.
21 days ago, we heard the words no parent wants to hear. “He has Leukaemia. I’m sorry.”
Our five year old son has Leukaemia. Sam has Leukaemia. I wonder whether I’ll ever get used to those words.
In so far as rollercoasters go, right now I feel like I’m a hundred metres in the air, upside down, on the second loop. And the rollercoaster has broken down.
21 days into this journey, it still feels pretty surreal. But this isn’t a dream.
How we arrived at this point is really rather an unremarkable story, except for the fact that it has completely changed the course of our lives. About five weeks before the diagnosis, Sam went camping with all the men in our family – his grandfather, dad, brothers, uncles and cousins. They had a fabulous weekend, but he arrived home on the Sunday quite lethargic, with a fever and one swollen lymph node, just near his ear. We called the home-visiting doctor, who prescribed some antibiotics, and in the next two days Sam was back to his normal self. At the end of that week, I went to pick Sam up from kindy and was told that he’d had a fall in the sandpit that day and was complaining of a sore knee. He’d been upset at the time, but was fine when I picked him up. Later that afternoon, the boys were jumping with a friend on the trampoline. Someone accidentally fell against Sam’s leg and he cried. When he didn’t want to put any weight on his leg five days later, I took him to a busy local medical centre (not our usual one, but it was late in the day before a public holiday) and the GP we saw put it down to a combination of soft tissue strain and growing pains and sent us off to with instructions to treat with ibroprofen and a heat pack when required.
Over the next few weeks, Sam developed an occasional limp with his sore left knee. His swollen lymph node, while ‘annoying’ but not painful, never went away. He never complained about the knee much, but it definitely started impacting on our happy, active five year old. We began investigating further, taking Sam to an osteopath to treat the knee, back to our regular GP a few times, requesting an x-ray of the knee, ultrasound of the lymph node and a blood test. The x-ray and ultrasound both came back with ‘normal’ reports. While the blood test came back with a few numbers slightly outside of range, it didn’t raise any alarm bells, especially for a boy who had recently had been ill. All the experts kept saying they thought the knee and lymph node were unrelated. But the knee never got any better and the lymph node still didn’t go away, and that niggling parent intuition kept driving us forward.
About a week before the diagnosis, our very lovely regular GP asked if we would mind if she took Sam’s x-rays home to show her husband, an orthopaedic specialist, for a second opinion. Divine intervention. She rang the following day, reassuring me that it “could be nothing” but her husband had seen a shadow on the x-ray that might need some investigating and we were asked to come and see him at the hospital the following week. By the end of that hospital appointment, we were advised that Sam would need to go under a General Anaesthetic for an MRI on his knee, and there was an appointment available in two days time. It appeared that some of the bone behind Sam’s left knee had been eaten away and they suspected either an infection or a tumour and, from the descriptions, either option seemed likely.
From this point in the story, I was pretty much a mess. The suspicions, the testing, the fear, the waiting all seemed far too familiar and I decided that, frankly, it was far too early for us to be putting on our superhero capes again within two years of discovering that Nicholas had Down syndrome. My heart wasn’t ready for another heartbreak. But I received yet another reminder that I’m not the one in control.
We fronted up for the MRI two days later (a Saturday) and handed over our biggest boy to the medical staff for testing. Sam recovered well and quickly from the General Anaesthetic, then we sat for what felt like ages waiting for a specialist to come and deliver the verdict. One of the reception staff finally arrived to tell us that a CT scan was required for further information and ushered us into another room for another test. Then we returned to the waiting game. A good two hours later, an orthopaedic specialist appeared and my heart was in my mouth. But he still didn’t have a definitive answer for us. He saw this as a good thing that it wasn’t obviously a ‘bad’ answer, and asked us to return to the hospital on Monday morning at 9am to see yet another specialist. He said that it was very likely the next step would be to cut into Sam’s knee for a biopsy. We went home feeling somewhat relieved that there wasn’t an obvious tumour in Sam’s knee and tried to relax over the weekend.
On Monday, both Ben and I took Sam into the 9am appointment with a more senior orthopaedic specialist, who was warm and friendly and sounded remarkably like Mister Maker. He put us all at ease while he gave Sam the once over, sent Sam for a blood test and a chest x-ray (to “rule out Leukaemia and Lymphoma”) and we all went our separate ways. We knew that a biopsy would most likely be completed in a different hospital and it was planned for a team of specialists to discuss Sam’s case later that day over at the Royal Children’s Hospital (RCH) so Ben went back to work, I went home to the boys and we figured we would get a call in the afternoon with more information. Despite being rather emotional before Saturday’s MRI, I felt surprisingly at peace that afternoon. Ben and I reassured each other via email, feeling as though everything was pointing to an infection. Leaving Sam and Nicholas playing in the backyard with Grandma, I took Charlie to casually pick up a few groceries. When we returned home, I was just about to make myself a coffee and some lunch when the phone rang. My heart lurched.
“It’s not great news, I’m afraid. It looks like Leukaemia.”
We were asked to head to the Royal Children’s Hospital as soon as possible, ask for the Oncologist and be prepared for Sam to be admitted into hospital that evening.
After ten days in hospital, we emerged with a truckload of medication, a whole new vocabulary of really big words and a treatment plan for the first four weeks of our new life with Acute Lymphoblastic Leukaemia (ALL). We emerged, focusing on the Oncologist’s words of “very curable” and “great prognosis”, feeling determined to approach this ‘new normal’ one day at a time.
I’d be completely lying if I said there weren’t many sad, angry, terrified, bewildered and crazy moments over the past three weeks… often all at once. And, yes, I would take this terrible illness away from my beloved Sam in an instant if I could. But, so often lately, I have heard one of us say, “We’re so lucky…” and giggled at how ludicrous that may sound given the situation. I am grateful for our thankful hearts that allow us to see how blessed we are in so many ways, despite the overall difficult diagnosis.
We feel lucky that the five of us escaped to a farmstay for a long weekend just before the diagnosis. We fed a menagerie of animals, went on a tractor ride, made campfires, sat under the stars, collected sticks, took photographs, made memories, connected as a family away from the real world for a little while. And we will treasure that moment in time.
We are so thankful that the diagnosis was made quickly and that Sam has begun this arduous process in a relatively healthy state; thankful that we live ten minutes from the hospital and have an amazing medical team looking after Sam; thankful that we have an incredible support network of family and friends surrounding us with oh so much love; and thankful for the partnership we have as a couple that allows Ben and I to face this new challenge as an indomitable team with our three little superheroes alongside us.
But, mostly, right now, we are thankful for the amazing kid who is currently sleeping soundly in his bed, who has faced this past three weeks with the most incredible strength and resilience, the cheekiest of grins, and wisdom beyond his five years. Our newest and most important job is simply to help our beautiful Sam get back to his active, happy life.
“There are moments in your life that make you and set the course for who you’re going to be. Sometimes they are little subtle moments. Sometimes they are big moments you never saw coming. No one asks for life to change, but it does. It’s what you do afterwards that counts. That’s when you find out who you are.”
Your attitude of gratitude is inspirational. There’s a higher power at work here… may He carry you gently. xx
Letting go and letting God as much as I can. Thanks for your love…and Aussie Animals cards x
Your family’s trials and tribulations have been so eloquently expressed by you. Wishing you and your wonderful family all the luck in the world. Your medics all sound wonderful….you’re in the best hands 🙂 Lynette
I truly do believe Sam is in the best hands, Lynette – such an amazing medical team. Thank you for thinking of us x
Thank you for sharing Annie. My heart is and eyes stinging as I read your words tonight with my own 5yo tucked soundly into bed… Your attitude is amazing and inspiring. It’s no wonder you produced three super heroes! But seriously, may you know through your roller coaster ride just how deep the love and support network is around you, and draw strength from that whenever you need. Love, Mel x
I do draw strength from our amazing network – we are so blessed with the amazing team we have around us, on so many levels – and I count you in that. Thanks Mel x
Too much too say, so will just sum up with <3, <3. I know Sam will have all those oncology nurses eating out of the palm of his hand. You guys are all amazing.
Thanks Cath. Not sure about amazing… we’re parents and we just do what we do for our kids, don’t we? And, yes, Sam’s charming nurses left, right and centre around here 😉 x
Oh Annie, what a beautiful woman and mama you are. Your positive spirit & determination are so clear in your words and in the images with your boys. I am praying for each of you as you go through each new day. Sending lots of love from Minnesota.
Feeling the love from Minnesota, thank you Angela xx
You truly are a superhero Annie <3 You and all your boys. Such a strong, positive and inspirational mumma. Sam is so lucky having you, and Ben, as his parents because he is surrounded by so much love. Xx
Thank you Janelle. I don’t feel like much of a superhero most days, but I do love those boys to bits and then some 😉 xx
Sending so much love!
Thank you so much xx
You are in my thoughts and prayers.
I appreciate your thoughts and prayers, thank you Kate xx
Hey Anne, Louise Crawford here. You are inspiring and I wish with all my heart that your road was so challenging. Those boys are so lucky to have you as their mum. I will keep your family in my prayers. Please let me know if there is anything at all I can do….
Thank you Louise. Your thoughts and prayers mean a lot x
Hi Anne – we received this link through John Mitchell. Our daughter was diagnosed with osteosarcoma 3 yrs ago. She went through prosthetic surgery, 24 rounds of chemo and many setbacks through a brutal 12 months but is 2 yrs post treatment and doing well at school, has a part time job, learns the guitar and provides both joy, inspiration and resilience to all of us. When we were going through this John, Megan and Delta were a critical part of our support structure and rallied around us in those early months – for which we are extremely grateful. From what I know of your extended family you wont be lacking in support which is vital for those momentary breaks that you will need as you devote your energy to do whatever it takes to look after the family. You sound like the rock that that my wife Janine was and still is. Good luck, take care of yourself and your partner and find us if you ever want to talk to someone with similar experiences. RCH Oncology is brilliant but there are always things to know that can help with the process. Regards Mark Ryan
Thank you Mark. It’s really lovely of you to touch base, and I’m so happy to hear your daughter is doing so well. We certainly are very lucky to have the extended family we do. Thanks for your offer of additional knowledge and support x
Oh, lovely Annie. It’s hard to make sense of it all. I wonder how you don’t collapse in a heap. But I think God knows you far better than I and has deemed you equal to this difficult task. I often joke I am relieved God seems to think I am deeply inept. 😉
Know that I am with you on this journey, in all the ways that I can be in this strange online universe where perfect strangers become cherished friends. I am so glad to know you and offer my unwavering support and love to you and your beautiful family, now and always.
I do often feel like falling in a heap, but funny how we parents just get in there and do what needs to be done. Hoping God thinks I’m inept when it comes to any future potential challenges though 😉 Thank you for your beautiful card, blog post and love, and for being part of this journey with us x
All our love and best healing wishes Annie and Sam. We are thinking of you often during this very trying time. Danae, Scott, Luke & Caitlin
Thank you – we really appreciate that. We have felt extra blessed to have our ‘kindy family’ (both this year’s and last) around us at this crazy time x
Annie, Ben and family – Maureen has been keeping me up to date with what is happening with your beautiful Sam. Rest assured that Sam and your family are in my prayers. My mother (who lives in a Retirement Village at Riverview) has started a prayer circle of all her old cronies (her words not mine ;-)) and asks everyday how Sam is doing. I’m always happy to pass on to her that he is improving daily. What a wonderful family you have – your attitude must surely play a big part in Sam’s recovery. Love and Prayers, Broni (of Courtice Neilsen)
Thank you so much Broni. Ben was chuffed to read your message. Extra love from Super Sam to your mum and her prayer circle xx
Thinking of you all a lot, Annie and sending some healing vibes sam’s way everyday too. Your resilience and grateful heart in the midst of this tough tough time are amazing and certainly a wonderful thing to teach your beautiful boys. Much love to you, I hope to see you soon xox
We are very blessed to have such a beautiful community of people around us and all your healing vibes and love. Thank you SO much for the beautiful and very thoughtful gift you delivered to us too xx
After reading your story in the Sunday paper I felt you were an incredible woman now I know for sure. Your writing is able to touch the hearts of all who read it and as tears sting my eyes I am also left thinking how amazing and strong we, as parents and as humans can be. I can only pray that I would be able to rise to challenges as you have, and have them make you and your marriage stronger. I keep you and your family in my prayers and look forward to your blog giving Sam an all clear!
You’re so right – as parents, I think we just rise up to meet any challenge that faces our family and it’s quite amazing what we are capable of when put to the test! I’m hoping that I don’t get given too many more tests though…my character is well built enough now, I think 😉 Thank you for thinking of us and keeping us in your prayers. I too look forward to celebrating the all clear and end to treatment x
Oh little Sam, iam praying for you and your family of superheros! Thank you for sharing so honestly your journey with us…you inspire me as a woman, wife and mumma xxx.
Thank you for your prayers Leanne. Most days I feel more tired than inspirational, but thank you for your kind words – they keep me going x
Oh Annie! Colin and I will be praying for Sam every day! Is there any way we can help all the way from Ohio? Can we send Sam a gift or donate money?
We are okay over here, but thank you so much for your donation offer. Maybe you could give something to a local children’s cancer charity or research organization. We really appreciate your thoughts and prayers though, thank you Laura and gorgeous boys xx
Oh Annie! We chat sometimes on Instagram (you often leave such sweet comments), and since you first shared there about Sam’s diagnosis, I’ve been thinking of you. I cannot imagine how tough this must be, but I get the impression that if anyone has enough strength and grace to deal with this, it’s you. After reading here, I am in even more awe of how you’re processing this.
My sister-in-law survived leukaemia from a similar age. I once asked her how her parents knew something was wrong, and she told me about the frequent bruising and lethargy. I often worry I’d not notice something so serious was wrong with my own kids (one in particular complains a lot about the tiniest things), so BIG kudos to you for going with your gut and looking for answers. I am so glad that you live in an area with access to great health care.
Sam is very lucky to have you as his mumma, and I have a feeling he is going to come out of this as one tough little boy, ready to take on the world. xx
It’s always good to hear good news stories. Parent intuition is pretty amazing – I’m sure you’d know even if your little miss was the one complaining 😉 Thanks for thinking of us xx
wow, what a whirlwind your famiy is having. I made the mistake of reading this post on the bus on my way to work! good thing I had my sunglasses on. Thinking of you lots. I love these blogs, and following your family grow on instragram.
Sunglasses have saved me often lately 😉 Thank you for thinking of us xx
My name is Julia. I found your beautiful family surfing around looking for consolation – I can’t sleep as our son will be having open heart surgery on 10/24/13. He has down syndrome. I am weeping reading this post. Please know, I am praying for you and I can imagine where you are. You are amazing and will be included in our evening meal prayers.
Oh Julia, as that big day approaches, I’m thinking of you and your beautiful boy and sending prayers too. It’s never easy to hand over our babies to health professionals but I’ve no doubt he will be in the best hands. Thank you for keeping us in your prayers. All our love x
Hi Annie, my heart goes out to you and your family at this difficult time. I will pray that Sam makes a full recovery and that you all get through this in one piece. I know a couple people who had ALL as kids and have grown into adults with no lasting effects. You are so strong and I wish you guys all the best. Xxx
Thank you Julie. It’s always nice to hear the good news stories xx
Thinking of you Annie. A beautifully written piece at what must be an incredibly difficult time. If positivity and love can heal then it looks like Sam is in the best of hands. Xxxxx
Thank you. If nothing else, we can do positivity and love in abundance x
Your son Sam, and your family are in our thoughts regularly. My wife and I have experienced your current mix of emotions when our little boy was diagnosed with ALL just over 2 years ago now. We wish you all strength and patience in the world. Kindest Regards, Stuart, Dana, Owen and Maya.
I often think of your family too since hearing your story, so thank you for stopping by. I think the host of vitamins Rebecca has us on was inspired by you 😉 Wishing you and your gorgeous boy continued good health x
I’ve just read this for the first time and I’m moved. Your courge is amazing, I’m not sure how I would react in this situation. I’m struggling at the moment and keep trying to tell myself how lucky I am- the words aren’t sinking in. I will be thinking of you and yor family tonight, you’ve helped me a million although you don’t know it.
Thank you for those beautiful words. You know, I think it’s all relative. We go through this Leukaemia gig and it’s a big deal in our world, but other people face lots of things that are just as big in their worlds. But, yes, if we can focus on the little blessings that we are thankful for, that usually keeps me going too. I hope things get better for you very soon. Will be thinking of you too xx
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