August 2013, less than one month before diagnosis
I’m not sure what I remember most about 9 September 2013, on the fateful day we received Sam’s Leukaemia diagnosis. Perhaps the voice of the doctor who first gave me the news over the phone, or how my own voice cracked when I called Ben and told him to come straight home. I am sure I have aged ten years in the past 12 months and it probably goes without saying that there have been moments I’d rather forget, but I am grateful for the perspective that time has given us and, most especially, for the healthy, happy six year old with us today.
We haven’t spent any time rehashing memories from the time after the diagnosis. Some of those moments will be etched into my brain forever, and some have been forgotten in the blur of emotion of those first few weeks. I suspect the blur is a coping mechanism, so we could manage to get through each day of that traumatic time, focussed only on the most important things. I remember feeling like I was in a fog, that I couldn’t possibly think about anything other than managing the logistics of where and with whom each of my children would be every day while Sam while was in hospital. I’m pretty sure I needed to remind myself to eat, and to breathe on occasion. My mantra was ‘be brave, show up’, and I listened to this song on repeat. When it wasn’t playing on my phone, it was ringing through my head.
The images in this blog post are in chronological order, starting just before Sam’s diagnosis until last week (I’ve inserted a slideshow of the same images at the end, so you can watch in progression). It appears we didn’t take any photos with the DSLR camera between early September until the end of October, although I know there were iPhone photos taken in that time. From the changes in his face, body shape and hair, it’s hard to believe that one child can look so different from one month to the next.
In that first month, ravaged physically and emotionally by the drugs coursing through his body, I remember wondering whether he would ever seem like my Sam again.
The first month of intensive treatment after diagnosis finished with Sam officially being in remission, meaning there were no Leukaemia cells detected in his bone marrow and that from that point he could follow the ‘standard risk’ treatment protocol for the next seven months.
Among other things, life with Leukaemia has been erratic. We received our general ‘roadmap’ for each block of chemo in advance, but the next appointment is only booked as the last appointment ends and things can change based on factors such as blood counts. Some weeks we’d have an appointment on a Tuesday, the next it would be a different day or not at all. Sometimes we’d have very early starts and Sam would need to fast for a procedure, other days it was a ‘short’ visit. In any case we’d rarely be out of the Oncology department in less than two or three hours. There were some harrowing appointments, moments and procedures, and some less confronting, but none we ever imagined that we would have to see our son go through.
Sam finished up his eight months of intensive chemotherapy and began the ‘Maintenance’ phase of treatment on 29 May 2014. This means that life is now somewhat more regular in terms of scheduled medical procedures. His hospital appointments have dropped back to one per month, for a chemotherapy drug to be given through IV, and every three months for intrathecal (through the spine) chemotherapy via a lumbar puncture under general anaesthetic. Sam now takes medication daily at home. We have a pretty calendar to help us keep track of which drugs to take on which days, but it’s amazing how quickly you become an expert on administering medication and, thankfully, he’s pretty good at taking them too.
He still has fairly regular blood tests, to keep an eye on how various factors are reacting to the medications, which is either done through a finger prick or through his port-a-cath, which was surgically inserted in his chest soon after diagnosis. This Maintenance phase will last another two years and take us through until Sam completes his treatment for ALL in November 2016, when he is eight and a half (he was five at diagnosis). It’s a marathon, not a sprint.
Thankfully, Sam has remained quite well over the past year and has only required a handful of overnight stays in hospital. We’re frequent fliers in the Emergency Department, where he needs to be admitted if he ever has a fever over 38 degrees Celsius. If this happens we go into action mode to juggle three children and two parents across two locations for as long as required. After the initial diagnosis admission of two weeks, I think our longest stint so far has been a week, so a pretty good record, all in all.
February 2014, complete with wrapped up toe and moon boot post the famous Australia Day ’tile incident’
While I’ve no doubt that Sam has been irrevocably changed from his Leukaemia experiences, he remains a sweet and generous kid. He is generally happy, polite and talkative, loves to draw and craft, and is doing well at school. He has just started doing tennis lessons and is “a gun” (according to his coach) with his hand-eye coordination.
In fleeting moments, I wonder how much more sporty he might have been if the Leukaemia cells hadn’t eaten away at the bone in his knee or the steroids didn’t bulk up his weight, but it is what it is. All we can do is to lead by example and encourage him to stay active and eat well.
February 2014, the day after his hair started falling out and we decided to shave the rest
It goes without saying that having a child diagnosed with Cancer is overall pretty crap, but I think the worst parts so far for me have been… watching my five year old endure far more than any five year old should ever have to; knowing that the most proven path to ensuring his survival is to pump his body full of toxic chemicals, but not know what the long term implications of that will be; the disruption to our family whenever Sam’s in hospital; and on a more day to day level, living with the stranger that inhibits Sam’s body when he takes steroid medication on five days of every 30 (it’s (really) not fun, and we do a happy dance when the last dose is given each month). We won’t even mention the more deep seated fears that we hide in the back of our minds and try not to give too much airspace to.
But we do what any parents in challenging circumstances do and we go on, and adjust to our ‘new normal’. And when we go on, when we try to stay focused on the love, we have seen many beautiful things evolve out of a Leukaemia diagnosis too.
There has been an outpouring of love and a strengthening of the safety net around us, as we have had to rely on those networks of family and friends to support us.
Amazing things have happened in our community. Students and leaders at Sam’s school gathered raffle prizes, raised money and shaved their heads to collectively raise over $7000 for the Leukaemia Foundation. We put out a call to join us for a fun run in support of the Cure Cancer Foundation and had 72 people join us in ‘Team Love’ to raise nearly $8000. We have witnessed our son initiate ‘SuperSam’s Surprise Box’ to help keep the basket of small incentive gifts in the Oncology department stocked for the children undergoing procedures, and we’ve watched our kindergarten and school communities quickly run with that idea and deliver many bags of gifts to the hospital.
March 2014, Practising spray painting our heads before Crazy Hair Day at school. A definite fuzz reappearing on his head now.
We have been embraced by some wonderful organisations, especially Camp Quality and the Leukaemia Foundation of Queensland, and been assisted on financial, practical and emotional levels by their wonderful teams. The boys have had some super fun days with CQ in what has been a tumultuous time in their lives. We know there are many wonderful charities and support organisations helping many families in similar circumstances every day.
March 2014, all set for Crazy Hair Day
We have been so grateful for the amazingly clever, incredibly dedicated, friendly and caring medical professionals who look after Sam. Words cannot express how indebted we are for their ongoing management of Sam’s treatment and the care they show to all the Oncology families day in and day out.
April 2014, at Noosa on our first Camp Quality Family Camp
We have slowed down, we have taken the opportunity to focus on what’s important and have learned how to say no to the things that aren’t.
April 2014, treatment day at the hospital
Our eyes have been opened to the hardships people endure and just how lucky we are, and we are more thankful than ever for each and every blessing in our lives.
May 2014, ready for a friend’s birthday party
September is International Childhood Cancer awareness month. I’m pretty sure that Acute Lymphoblastic Leukaemia is considered to be one of the ‘good’ Cancers, if such a thing exists. I’m pretty sure that, in the grand scheme of all things Cancer related, we’ve had a fairly fortuitous run so far, touch wood. But, I’m also pretty sure that the world would be a much nicer place if no Cancer existed, and if five year olds could run and play and jump and didn’t have to worry about being hooked up to IV machines (ever) or having ports inserted into their chests.
So, as we approach the end of September, I invite you make a donation to a Cancer related charity of your choice, maybe on behalf of our Super Sam or someone close to your heart. Or do it for the kids who have lost their fight, and the families who are living without their beloved sons and daughters.
If you don’t know any particular charities, here are a few suggestions:
Leukaemia Foundation – http://www.lfq.org.au/get-involved/donate
Cure Cancer Australia – http://www.cure.org.au/you-can-help/ways-to-donate/
Childrens Cancer Institute – https://www.ccia.org.au/support-us/how-donate/
As it mentions on the CCIA website, we wholeheartedly agree that when three children die of Cancer each week in Australia alone, that is three children too many.
So please, go now, make a donation, however small, and help those researchers find a cure.
And thank you from the bottom of our hearts for being part of Team Love x
July 2014, after celebrating our school fete (and, incidentally, during a course of steroids)
August 2014, our big school boy
September 2014, with Mum at Grandpa’s farm
September 2014, with Dad after the sports carnival, on the last day of a steroid dose. Check out the hair now!
Our SuperSam, late September 2014
If you’re new to Sam’s Leukaemia story, you can find the post on Sam’s diagnosis here and a follow up post here.