Meet Megan, a mum whose child had cancer.

Here she shares her story, how she coped, how she found the positives, how she ugly cried, how she still wants you to ask her if she's heard about Rob and Blac Chyna's baby, how it works on a child cancer ward, how caring the nurses are and how amazing her mates are. It's an insight into her life where herself and her partner Ross had their world ripped open with one word, but how they have laughed when they should have cried and joked about things inappropriately. She is Riley's mama and she is someone I am lucky enough to call a friend after meeting through those tiny squares of IG when our boys were both almost one, she is the definition of strength and Riley the definition of champ, they are are unit, they are a triangle the three sides supporting each other holding each other up, they are AMAZING. IG @meganbedford Snapchat meganbobby

I’ve struggled with how to find the words to describe the enormity of what my little family has been through and how I feel about it. I’ve tried and failed several times.  It’s a pretty surreal thing and what I’ve written here doesn't really reflect the emotional impact of what’s happened on my partner Ross and I. It’s more like a simple explanation of the logistics of our last 10 months, but doesn't even begin to describe the feeling of being told your child not only has a life threatening condition, but that to have any hope of conquering it, they will need to endure a harrowing and extremely unfair course of treatment. I feel like we’re only now just beginning to come to terms with everything so if this lacks any introspective musings, I apologise. It’s also come off sounding incredibly serious because, duh, it’s cancer, but we are generally pretty upbeat people who focus on the positives, so I don’t mean for it to sound so somber!

We have remained fairly private about our ‘journey’, sharing only snippets on social media, and never anything that would compromise Riley’s right, despite his age, to ownership of potentially vulnerable moments. However I’ve always believed that shared experiences, particularly challenging ones, bring strength to people that need it, so I’ve given it a go. It’s pretty long, bear with me!

Megan and Riley mid-treatment.

Megan and Riley mid-treatment.

iley looking a bit groggy after his biopsy the very first day we arrived at starship.

iley looking a bit groggy after his biopsy the very first day we arrived at starship.

Our story

On August 19th last year, my young son Riley was diagnosed with cancer. If you want to stop here it’s okay, I totally relate. While I was pregnant and after my son was born I often couldn't cope with reading sad stories about kids at all, that half-terrified ‘ignorance is bliss, if I don't acknowledge it it'll hopefully never happen to us’ kind of thing. (Dumb I know, but I never claimed I was a tough person!) But if you do want to continue I promise it's a positive story mostly, and I’ve learnt a lot, and become a hell of a lot more compassionate, I swear! Plus, it’s heartening to realise what humans can handle when they have to.

I’d always thought if something like that happened to my child or my immediate family I would fall apart. And for sure, there were a LOT of tears those first few days but there was also a definite sense - that remains today - that I couldn't change what had happened, and that we had to grit our teeth, brace ourselves and go headlong through whatever was to come and do our utmost to make life great for our boy. No matter what.

Diagnosis

At that date in August 2015 my precious boy was 20 months old, a happy, rambunctious little charger who kept us on our toes constantly. He was healthy as anything apart from the odd daycare cold (he was going 3 days a week while I worked as Deputy and Beauty Editor for Fashion Quarterly magazine) and snotty nose. But over the course of a few nights while dressing Riley after his bath Ross became concerned that one of the muscles in the top of Riley’s leg were harder on one side. It felt dense, like if you tense your butt muscle. I thought it was weird but kind of brushed it off, putting it down to bruising from constantly leaping off the arm of couch while playing.

Thankfully Ross is a careful, thorough and logical person and after checking it each day for a week we decided I would take him to our GP. She agreed with me and said she thought it was a haematoma, or deep bruise, but to come back in a week. A week later she sent Riley and I up the road to a radiology clinic where they did an ultrasound while I attempted to hold a wriggly, giggly, almost-toddler still. I should have known when the woman doing the scan left the room and didn’t come back for about 25 mins. Tbh I was just trying to stop Riley flying off the office chair he insisted on lying on his stomach spinning around on for entertainment! But no, she sent me home and said I’d have the results in an hour or so. Later my GP called and said they weren't sure what it was but it needed further investigation. We’d need to go to Starship the next day for a biopsy. At that stage I was mostly concerned that Riley would need a general anaesthetic, my little boy being put to sleep, he’s so little! It seems so, so wrong. Unfortunately little did I know it would pale in comparison to what was to come. That and the fact he had to be nil by mouth for quite a few hours so he was incredibly grumpy! Being called in to see him in the recovery room I was so upset seeing him so groggy I bawled my eyes out, while Ross cuddled him. But Riley being Riley, within minutes all he wanted to know about was ‘where’s my bot bot (bottle) at?!!’

Six days later a paediatric surgeon and another doctor - who would become our primary oncologist (cancer specialist) confirmed our worst fears. He had a 5cm tumour in his gluteus maximus muscle. He’d need major surgery to remove it, plus nine months of chemotherapy and possible radiation. Nine months! It sounds so stupid but as they explained the next steps the first thing I actually asked them “How am I supposed to contain/entertain him in a hospital room even for one day?” (At this stage my full-on little guy had emptied the toy box onto the floor, tried to empty the doctors desk drawers and was thoroughly bored. Mamas of boys ya feel me?)

The next day he was admitted for full CT scan to see if the cancer had spread anywhere else (first good news - it hadn’t!) and for surgery to insert a portacath (or ‘Port’) in his chest. This is a small pad that sits under the skin with a tube that connects to his jugular vein. It’s used to administer liquid chemotherapy drugs and fluids directly so they don’t need to continually insert an IV line in his hand and can stay in the body for several years. Props to whoever invented it, it works brilliantly. After he woke up in a bed in the recovery area a nurse wheeled Riley up and introduced us all to our new home away from home, on Starship’s top floor. Ward 27b. The paediatric blood and cancer ward. Incidentally it’s the nicest ward in the hospital and while it was traumatic to start with, we’ve all become used to staying there when we’ve needed to, including most recently, much of last week!

Ross and Riley in our hospital room after our first night’s stay.

Ross and Riley in our hospital room after our first night’s stay.

Ross and Riley the day we shaved Riley’s head, 10 days after chemo started and his hair began to fall out. He was just chuffed he now looked like Dad!

Ross and Riley the day we shaved Riley’s head, 10 days after chemo started and his hair began to fall out. He was just chuffed he now looked like Dad!

Treatment

Those first few days and weeks were SO overwhelming, our heads were spinning but the good thing about a toddler is that they force you to live in the moment: ‘Where’s stuffed Monkey? Oh the balloon fell down, pick it up Mama. Oh I can’t get the raisins out of the packet. Oooh bubbles!.... Mama, Poo!!’ He’s a bloody character so his good nature has lead us in every respect. The whole experience has generally been a lot more upbeat, day to day, than it could have been, and I have to give him all the credit for that. Well, that and Ross and I’s ability to have a few laughs (inappropriately at times!) in order to cope.

In terms of work, my company said to take as long as you need, and I’ve been off work since then. Ross took several weeks off initially and has taken days as needed over the course of the few months - his work has been awesome and accommodating of the stress we were experiencing.

Initially we stayed in the ward for 6 days and then returned home with a tonne of information about how to protect him while receiving outpatient chemo. The plan was to head into Starship each week for chemo appointments designed to shrink the tumour enough that it could be operated on after 3 months. At first it was so big that removing it straight away would have cause huge damage to Riley’s leg, and subsequently, if he survived, his quality of life.

Chemotherapy for Riley generally consisted of liquid being slowly administered by IV drip through his port over several hours as well as hydration fluids so the chemo wouldn’t damage his organs, although some types (he had several different ones) are just quick injections.

Staying in hospital is boring! But Riley found new ways to entertain himself

Staying in hospital is boring! But Riley found new ways to entertain himself

The upside of hairloss: More room for facepaint!

The upside of hairloss: More room for facepaint!

Because chemo unfortunately also blasts the cells responsible for immunity, we have lived in relative isolation since diagnosis to protect him. So we didn’t take him to any crowded areas like supermarkets or malls and he wasn’t able to see other kids, except for the rare occasion we trusted they were well. Young kids can’t tell you if they're feeling a bit off or coming down with something. The few people that spent time with us were always in good health and religious about hand-washing and sanitising. The thing we could do (and we did it A LOT) is play outdoors, as long as we kept our distance from other people. Most non-hospital weekdays you’d find Riley and I charging around the local (thankfully generally deserted) parks and playgrounds, climbing and playing and talking to (chasing!) ducks, sparrows, pukekos, cats and dogs. We’ve been lucky that only one of our hospital admissions was an unexpected illness, a high grade fever. Things like common colds can make cancer kids very, very sick. Fevers and things like chicken pox and measles (please, please immunise!) can be fatal. So we haven’t taken many chances.

We’ve also been super lucky that Riley has been generally pretty well, (save for the expected chemo nausea) for the majority of treatment, so he has acted and reacted mostly as any toddler would. It’s been a huge relief because when I heard the C word I thought he would be lying deathly ill in a hospital bed for months. And yes, that does happen to many kids on the ward, but again, thankfully, Riley has managed really well, although it has been much harder recently as the chemo started to take its toll.

Riley’s nurses know to fetch the fastest moving IV pole in the ward when we arrive, he loves to ride it down the hall like this

Riley’s nurses know to fetch the fastest moving IV pole in the ward when we arrive, he loves to ride it down the hall like this

We have had periods staying in the hospital, particularly when, 3 months in, Riley had surgery to remove the major muscles where the tumour was located. The muscles removed are primarily used to balance and walking. Logistically this was a huge challenge for us all as our adventurous toddler became confined by what’s called a Hip Spica plaster cast around his ribs/stomach all the way down to his toes on one leg. I was terrified he would freak out when he woke from the surgery unable to move, as he was too young to fully understand our basic explanations beforehand. Again he astounded us with his ability to take things in his stride (and adapt ball games and dancing to being confined flat on his back). At one point he had four nurses and I dancing to Beyonce and Taylor Swift around his hospital cot. Full credit to those Starship nurses who slayed ‘Single Ladies’ with full commitment!!! We also acquired a mini basketball hoop so he could toss balls at it from his bed.  

He was in the cast for two weeks and although the docs said he may not walk again for many months afterwards (if at all - worst case scenario) he absolutely nailed it by strolling down our hall at home 10 days after the cast came off. It was just before Christmas and though we weren't really in the festive mood, it was the best Christmas present I’ve ever received. My heart was full to bursting (as it often is) with love and pride for my little dude. His body needed to re-learn how to walk using different muscles and it did take a while overall but thankfully it hadnt been long since he learned to walk as a baby, so it was easier than it would have been for one of us.  

The next bit of good news came soon after surgery when our doctors told us they believed they managed to get pretty much (there’s no guarantee) all of the tumour out and he wouldn’t require radiation. Great news as this treatment can bring with it some grim side effects, as well as stunting the growth of very young children.

Starship allows one parent to stay with their child each night, so each night we are in hospital I sleep on a fold down bed next to his cot. Ross has also stayed with him, more recently for several nights. We both find it really hard to be the one that goes home!

Last day of chemo in the ward with mum

Last day of chemo in the ward with mum

Forget about a wheelchair! An entertaining mode of transport while in his Hip Spica cast from ribs to toe.

Forget about a wheelchair! An entertaining mode of transport while in his Hip Spica cast from ribs to toe.

What’s next?

As I write this Riley had his last chemo treatment last week. In two weeks time he will have another raft of tests/scans and will need MRI’s every 3 months for at least 2 years. Even then there’s around three more years before you’re called ‘cancer free’. What we know from previous scans the doctors are fairly confident he’s been given a really good chance and that there is little to no trace of the cancer at this point. The other mums talk of ‘scan-xiety’, that feeling when you go in each time to see if your kid is still clear. Of course, it’s not rare for relapse to occur and it to come back. I’m not sure how you live with the terror of that possibility but I guess we’ll find out. Again, the most important thing is to make sure the three of us are as happy as we can be and enjoying life every day. We’re super excited about a family holiday in Queenstown in August to try and draw a line under this experience and begin to move on.

The surgery has meant he has weakness in one leg. Although he can walk and run normally (at least in the eyes of most people) he has trouble walking up and down stairs and we don’t know what challenges he will face in regards to that as he grows but he’s beginning to have physio. The funny thing is, his absolute favourite thing to do is kick a ball around a field (or the living room) and he does it better than plenty of kids his age. He amazes me!

Riley with his Beads of Courage. He received one for each procedure he went through including, needles (black), chemo (white) and overnight hospital stays (yellow).

Riley with his Beads of Courage. He received one for each procedure he went through including, needles (black), chemo (white) and overnight hospital stays (yellow).

Below are a few questions Rebecca asked me to share:

What have you found the most difficult when dealing with Riley’s illness? Seeing your child struggle or in pain. Thankfully the Starship doctors and nurses have taken such amazing care of him so it’s rare, but I am not a strong person and when he struggles or is particularly unwell I tend to crumble and become very emotional, despite the need be tough and supportive for him, and for Ross. I feel incredibly guilty and mad at myself for this as they both need me, but it’s just something I can’t control that much. Ross has been amazing through all of this and he’s been rocksteady when I have been weak, though to be fair, we do tend to take turns being the ‘down’ one.

What kind of impact has Riley being sick had on your family/relationships?

A big one. We haven’t seen much of our family and friends as generally they have young families of their own and most of them attend schools or daycares where illness is a part of life and the risk of infection is just too great. Ross has still been going to work day to day so he still has social interaction but most days it’s just Riley and I. Any stay at home mum will tell you that gets a bit tough and you do go a bit bonkers! Enough of Paw Patrol and Bubble Guppies already! The amazing thing about social media though, is staying connected virtually, and I’ve made the most of it! I LOVE Instagram and Snapchat. Plus, I bloody miss work! I have the best job, I can't wait to go back but it will be hard to leave Riley after all this! I have no doubt he will absolutely love being amongst his pals again though.

What kind of support system have you got?

The main one is Ross. We don’t delve deep into our situation day to day and it doesn't define us, but we definitely hold each other extra tight when one of us has the occasional ugly cry! It’s been challenging at times on our relationship too, but I think we’ve managed to stay pretty tight.  Other than that friends and family have been pretty good at staying in touch. One friend (love you Claire) has text me every single day since we found out with a simple “How are you?” I can’t even explain how much that has meant to me. I have a Whatsapp group with two mum BFFs that have kids the same age as Riley and they have been a constant even keel when I need to unload. And then my pal Amber who lives in LA did things like having a massive pile of groceries delivered to our door the first night we came from the hospital. It makes me well up (Alert! Ugly cry imminent!) thinking about the fact she did that. (plus loads of other things.) People are actually amazing and I feel so incredibly humbled thinking of what people have done for us. Even RIley’s daycare have gone above and beyond.

If there was one positive to come out of this what would it be?

Ooh. hmm. I’m generally a pretty positive person so I have remained thankful for many instances in our experience. Living close to Starship is one. I can’t understate how fucking incredible the Starship nurses in particular but also Riley’s docs and surgeon, have been. People always say we are tough, we are brave, but we’re not, we have no choice but to go through this. But the people that have chosen a job caring for others, particularly kids, in this situation are the true heroes. What those nurses have done for my boy…. okay I’ll stop because the ugly cry threatens once again.

Another is that I’ve had close to a year of one-on-one time with my boy, that I wouldn’t have had otherwise and despite everything we’ve had a hell of a lot of fun! I’ve also gained a pretty giant helping of perspective about other things I might once have complained about. The main one is that Riley is so young that he hopefully won’t have any recollection of what he’s been through.

What do you want people to know about having a kid with a serious illness?

That day to day dealing with it isn’t all doom and gloom and that humour (crazy as it sounds) makes it way easier to deal with. Also if you want to support someone going through something like this, don’t ask what you can do - some moments early on I couldn’t even cope with replying a text - just do something. From creating a box of distraction gifts and activities, to dropping off a meal at home, to flowers, to Facetime, to leaving a delicious wrapped sandwich at the ward’s reception (thank you Gemma). My brother has dropped everything several times to fly up from Dunedin to just sit in a hospital room with us. Medical details get pretty boring to the average person but they are our life so please, please, don’t get bored. We need someone to tell. And stay in touch. If you don’t know what to say, say that! Or ask if we’ve seen the latest episode of the Bachelor or if we’ve heard that Rob is having Blac Chyna’s baby. Seriously.

Riley’s hair has started to grow back recently, so handsome!

Riley’s hair has started to grow back recently, so handsome!

During the last 10 months we have received support from the Child Cancer Foundation that provides a person to help with lots of little things as well as initiatives to make life with cancer more bearable for kids. If you have a chance please donate to CCF: http://www.childcancer.org.nz

We have also come to know another organisation called Gabby's Starlit Hope. This family-run initiative was created by a young girl named Gabby to provide random acts of kindness for other children fighting cancer. Gabby sadly passed away last year but we have benefitted from her ideas, including unexpected bordom buster packs and little toys and gifts to keep Riley entertained during long or traumatic periods staying in a ward. They helped immeasurably. Please think of donating to GSH: http://starlithope.org.nz