Liam’s fight with brain cancer

Update posted by Asa Candussi Wilkins On Nov 03, 2018

This update is months overdue! We kept waiting for some test to be performed and then the result wasn't quite anything, so then we waited for more tests, and one day took the next and here we are.

Liam finished his last round of chemo with no further side effects - he was rocking the no-hair hairstyle and the biltong cravings during the chemo, but never suffered like some of the other kids in the ward. His blood count did come in really low after the chemo, so radiotherapy had to be postponed a couple of weeks, to bring his immune system back up a notch. We also had to wait for an MRI to show the final effect of the chemotherapy.

Every MRI has been done in private hospital (as the public has a waiting time of 2 years!), and we have been handed the report without explanation, until we got to see the doctors at the Queen Mary. This post-chemo MRI report unfortunately gave us all a bit of a shock and setback, as it showed no further shrinkage in the tumour since the mid-way scan. We were devastated and confused, but as always, Liam looked on the bright side - 'it could be worse; at least it hasn't grown'! How a 9 year old cancer patient can pick up his parents like that is unreal! When we finally got to meet the doctor 3 days later, his words were: 'well, that's good news then'. That's it - no further explanation! Our thoughts were - how on earth can it be good news that the tumour hasn't shrunk anymore??!! And so we dug our heels in and refused to leave until we got to speak to someone who could explain the good news in layman terms. Effectively, the tumour was still very much present, but seemingly now made up of inactive cells, so the chemo had done what was expected, and killed the cancer cells, and it would now be up to the radiotherapy to blast the remainder.

Finally, on 11 September he went in for the very first radiotherapy session. As it was the first, it lasted about 20 min, and Liam was shattered after, possibly from the anxiety and stress over being locked in a room all alone, bolted to a bed with a Silence of the Lambs style mask covering his head. It is the worst feeling leaving your child all alone in a scary and unknown environment and telling him to lie dead-still. Imagine Dragons helped along the way, as we were allowed to leave a phone with Believer and Natural thundering - much to the wonder of the, mostly elderly, patients waiting their turn in the waiting area. It would seem it's not the normal thing to do, but whatever calms your child, right?!

After that first treatment, we had a schedule of 23 more sessions spanning over weekdays the next 5 weeks. Not even the typhoon could keep Liam away - after a joint morning effort clearing 8 fallen trees across the road out of our village, we took a 2+ hour drive to the hospital, a trip that usually takes 50 min, so Liam could receive his 6 min of radiotherapy.

Once again, Liam wasn't suffering from any of the potential nasty side effects, except for losing the hair that had just started growing back. Whereas the chemotherapy took it all and made him evenly bald, the radiotherapy has left a ring around his head, and we're just hoping that this will not be permanent, but know that there is a risk. In the meantime, we have found a nice barber who is slowly working the top into a mohawk, so it all looks like it's a fashion statement! Where his hair is growing, it's incredibly fast, and maybe, if we're lucky, he won't end up completely bald at 17 (like his dad), although if he does, we now know that he has the head to wear it!

Once again, Liam charmed the team with his happy spirits and sense of humour, but not enough to take the mask home as his Halloween costume after treatment ended. Thursday 11 October marked the final day of radiotherapy - by then each session lasted a maximum of 3-4 minutes - once or twice he didn't even get to finish the Imagine Dragons song!

On 16 October we then had the final, post-treatment MRI, and once again were handed a report with no explanation. This report showed great shrinkage of the tumour, but unfortunately a small bit is still remaining in his brain. This of course knocked us out again, as we had hoped that it would all be over. We only got to meet with the doctors at Queen Mary on the Friday, and after waiting almost 4 hours, we were told that this is normal, and that no more treatment will be needed for now, but that we will need to monitor with regular MRI scans. Good news? We weren't convinced, and all felt rather deflated.

On 25 October we then had a meeting with the neurosurgeon who operated on Liam back in May. Finally someone who took the time to sit down and explain in normal terms what we have been and are dealing with. He showed the comparison of the tumour on the 4 scans, so we could see the shrinkage - first time the tumour had been clearly pointed out to us on the pictures. He also explained that the tumour had been made up of two types of tissue - the malignant, hugely aggressive cancer cells, which had made the tumour grow so quickly, and which were highly treatable, and the benign, slow-growing cells, which is what is remaining. So where we believed that the remnants of the tumour were dead cells, the corpse, it turns out that they are actually active, but benign cells, that may or may not grow, then shrink, then grow again. Unfortunately these cells do not respond to any treatment, and would have to be surgically removed, if we wanted a clear brain. That's not an option at this point though, as it would be too risky a road to take, due to the location in the brain. Instead, Liam will have to go in for an MRI every 3 months for the next 3 years, and if the tumour is stable by then, the MRIs will slow down to every 6 months, and eventually annual scans for the rest of his life. In addition we will have monthly blood tests to check for cancer markers elsewhere in the body.

On 22 October, Liam went back to school, and he is settling in nicely - he loves being back in the classroom amongst his friends. Fortunately all this coincided with the summer holidays, so he ended up missing only 3 months of school altogether. We are all trying to come to terms and get comfortable with our new normal. Things will never be the same again, but we made it through the worst six months of our lives, and as the saying goes - if it doesn't kill you, it'll make you stronger.

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And we couldn’t be happier to have him back! I knew the other day when he arrived a little early and had to wait to go up to class, in the little glass office. I said to him “Morning Liam, you’ll just have to wait a few minutes on the table inside”. To which he smiled wryly and said “I take things very literally, you mean AT the table, right?!”. Hahaha. “Yep”. He’s gonna be alright! Sarcasm still firmly intact! xoxo

Natalie Mierczak

Update posted by Nov 03

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Update posted by Asa Candussi Wilkins On Aug 04, 2018

This update is a few weeks overdue - we had it all typed out, and then a technical glitch erased it before it was uploaded. Anyways, here we go:

Liam has had enough! Although he is not suffering from too many of the possible, awful side effects of the chemotherapy, he's done with it - unfortunately the protocol doesn't agree, so Liam tried to put his argumentative skills to good use with the doctors, reasoning that if Jeff the Jerk shrank by 90% (we've outsourced the calculations to confirm ours) after 2 rounds of chemo, chances are it will be completely gone after round 3. Therefore, it would make sense having an MRI after round 3, instead of waiting until after round 4, because, as his argument goes, if an MRI now shows no sign of Jeff, then surely round 4 can be skipped. Unfortunately Liam was up against the best of the best in the 'cannot' game - 'the protocol must be followed' and the all-winning counterargument of 'we don't do that' lost us the debate. That said, the doctors did have some good reasons not to skip the final round of chemo, for example that the MRI may show no more tumour, but that doesn't necessarily mean that tiny cancer cells aren't there, flowing around freely, only that they can't be picked up by the scanner, and if that were the case, it could have terrible consequences if round 4 was skipped, allowing the cells to grow back.

At times it can be difficult to comprehend how serious this all is. Liam is happy, albeit bored, and if it wasn't for the bald, scarred head and the tube sticking out of his chest, you wouldn't know he's sick. Yes, he is nauseous during and just after chemo, loses his appetite for a few days, and generally feels more tired and weaker (no push-ups!), but it's nothing compared to some of the poor children in the ward. We get to go home every evening and have only spent one night in the oncology ward, right in the beginning, and then only because we didn't know how Liam would react to the treatment, and wanted to be close, just in case. Liam's constantly joking with the nurses, calling them vampires for stealing his blood, covering their fangs with their face masks! Most of them laugh and go along with it, but the older ones don't quite get Liam's wicked sense of humour. We don't feel like we're living with a sick child. But then the doctors point out that although Liam is responding extremely well to the treatment, the tumour is still of a significant size, and the whole situation is still dangerous, hence the no go on skipping round 4. Even though we know that we're nowhere near out of the woods, that midway scan gave us a sense of 'we'll be fine'. And we're sure it all will be OK, but every now and then we realise what exactly it is we're in the middle of, and that can throw anyone off course.

Liam himself pinpoints it - cancer is bad, but it's not all bad. We have had some pretty spectacular things happening these last months; just plain incredible things people have done for Liam and us as a family. There was the school push up challenge, which was awesome! Then there was the team of people (you know who you are!) trying their darnedest to arrange a meeting with Liam's greatest idol - you know it! Dwayne the Rock Johnson. That unfortunately was mission impossible, but we did get a very special something from this, which we will cherish forever (we have been sworn to secrecy by DJ's PR team, and can't reveal any more here, but let's just say that if we didn't think he was awesome before he visited Hong Kong, we do now!). And of course, there are all of you who continue to support us in every way possible, which we are unbelievably grateful for. If it wasn't for cancer, none of these things would have happened.

So, here we are, 3 rounds down, last round knocking on the door, just 2.5 months after we had that first fateful, precautionary MRI.

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Update posted by Asa Candussi Wilkins On Jul 04, 2018

We have had a busy few weeks, kicked off by round 2 of chemotherapy on Thursday 21 June, after Liam's blood counts had bounced back. All went well; luckily Liam is not suffering much from the treatment, and we were looking forwards to two weeks of recovery. If by recovery they mean in and out of 3 different hospitals for two weeks, then yes, we got it! After the brain surgery, Liam was sent off to the Duchess of Kent Children's Hospital for a baseline check, to make sure that his daily functions aren't affected. This meant assessments by a physiotherapist, an occupational therapist, a psychologist, a speech therapist, and an ophthalmologist. Although this has meant some long days at the children's hospital, we are very impressed with the way the system works, and how every aspect of Liam's care and rehabilitation (not that he needs any at this stage) is taken into consideration.

In addition to the assessments, we have had to get started on the preparation for radiotherapy, once the last two rounds of chemo are complete. This was a rather traumatic experience, with a helmet being moulded around his head, then re-moulded, as the first one was too tight - it's a good thing Liam doesn't have any claustrophobic tendencies, as the helmet will strap him to the bed during the radiotherapy sessions. He took the whole thing like a true super hero, even if his parents were distressed watching him strapped down, then having to leave him alone in the room for a CT scan. The helmet is important, as it helps guide the radiation to the exact spot, avoiding damage to the surrounding brain tissue, but it does look like a scene out of Silence of the Lambs!

We were also scheduled in for a re-assessment MRI scan after the second round of chemo, and we were all anxious for that day to come, as it would be the first indication of whether the treatment is working. And boy, has it worked. We're still debating the maths, but it looks like Jeff the Jerk has shrunk to somewhere between 5 and 30% of the original size! We haven't yet had a chance to see the oncologists to discuss the results, but even with our layman reading of the radiologist's report, there is no doubt that this was good news. It had been a long day for all of us, but particularly for Liam, with the MRI at the Adventist Hospital in the morning, then a quick lunch, followed by blood tests at the Queen Mary in the afternoon. While we were waiting at QM, the Adventist called to let us know that the report was ready, but Liam was having none of it! He just wanted to go home. After some negotiation, we got the report, and Liam was over the moon when we told him that all his hard work and efforts are showing results! In his words - 'that wasn't good news, that was AWESOME news!'

And on that note, we await further assessments next week, as well as blood tests on Wednesday, which will hopefully have his blood counts back up at a level where we can start round 3 on Thursday - fingers crossed!

Once again, thank you to all of you for your positive thoughts, prayers, well wishes and support!

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Update posted by Asa Candussi Wilkins On Jun 17, 2018

Week 4 brought disappointment and side effects, but also a huge mental boost.

On Friday Liam had to go back to the hospital to check the blood count and get the all go for round 2 of chemo. Unfortunately his neutrophils were still way too low, so the scheduled chemo session starting on Tuesday had to be postponed. We will check again on Wednesday, and with a bit of (rotten) luck, we will be able to kick off round two on Thursday or Friday. Liam is determined to get rid of Jeff the Jerk, and it was something of a set-back that we can't just whack on with the treatment, and get it all over with. But we just have to deal with the blows and take it all day by day.

Saturday was then the day Liam started pulling his hair out in tufts. After looking like a mad scientist for a day, he finally allowed Dad to give him his first wet shave ever. He's rocking his new look - looking more and more like his big hero (no, not Dad; the other D - Dwayne Johnson). All he needs now are contact lenses, and maybe a tan and a bit of bulk - we're working on that last bit.

The most positive thing that happened in this last week was that Liam's class organised an amazing push-up challenge pledge for the students and teachers. The kids in his class got sponsors for the amount of push-ups they could each do, and everyone else at school could enter the challenge at a fee. It was an overwhelmingly incredible turnout, with so many contestants, the challenge had to be run in heats, and they raised a whopping HK$13,000! Although Liam is immune compromised and supposed to stay well away from crowds, we decided that the mental boost from seeing the action would far outweigh the risks, as long as we had him wrapped up in his mask, and everyone stayed an arm's length away. It was awesome to see how everyone is behind Liam and supporting him on this awful journey - it makes it a lot easier, knowing that we're not doing it alone. Thank you to everyone who participated in and supported the challenge! Liam especially enjoyed Mr. Buck and Mr. Gibbs' buddy pushup.

So, the coming week brings a check-up and hopefully the beginning of round two - who would have thought you could ever wish for chemotherapy to be on your schedule!

Thank you again to all of you for your continued support, thoughts, well-wishes and prayers, we really appreciate everything you're sending our way!

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Update posted by Asa Candussi Wilkins On Jun 10, 2018

It is just over 3 weeks since we got the diagnosis, and Liam has been doing really well through the first round of chemotherapy. We have been home to recover the last week, but with visits to the hospital Tuesday and Friday to check the blood counts. Everything was fine for the first check, but unfortunately the neutrophils (the white blood cells that fight off infections) had come right down on Friday. This means that Liam is now officially immune compromised and visits should be minimised. We also need to keep him away from crowds - we live in the perfect spot for that, out in the woods in Lantau! If we have to take him out in public, he has to wear a mask, which he absolutely hates - who can blame him! We also have to monitor his temperature on an hourly basis, and if it reaches 38C, it's straight back to the hospital for IV antibiotics.

Since the brain surgery, it has been quite difficult getting our heads around how sick Liam really is - he felt so much better after the headaches were gone and has been his normal, happy self the last two weeks. It is only now that we are starting to see the treatment taking effect - Liam is feeling physically weaker and more tired, and he is getting frustrated at both.

Liam's second round of chemo is scheduled for 19 June, but it all comes down to his blood counts - if the white blood cells aren't up on Friday when we go back for a check-up, Liam won't be ready, and the treatment will have to wait - as someone said the other day: 'cancer has no calendar'.

Thank you once again to everyone who has contributed to Liam's fund. We really appreciate everything you are all doing for us - contributions, thoughts, prayers, frozen meals, offers of accommodation and parking near the hospital. It is still our intention one day to send you all a personal thank you, but as you can imagine, we have a lot on our plates at the moment, so until then, a collective thank you to all!

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Update posted by Asa Candussi Wilkins On May 31, 2018

Thank you to everyone for the absolutely overwhelming support - we are speechless, and never expected this much help from friends, family, colleagues, clients and complete strangers. You are wonderful people, and we will make sure that every penny is spent wisely on making Liam and Nathan comfortable during this time.

Liam's first round of chemotherapy is over - he is doing well, and so far the only side effect is that he is extremely tired after each treatment. We are now entering our 2 weeks of recovery from the drugs, before hitting them again. This does not mean two weeks of lounging on the couch, watching TV though. Today we have another MRI scheduled to check Liam's spine and make sure that the cancer is limited to the brain. After that it's stitches out time - brain only, the central line stitches are staying another week - much to Liam's regret, as all he wants to do is get back into his push-ups! If all is healing nicely though, he has his doctors' (and mum's) permission to proceed with the exercises.

Liam's goal in life is to be the strongest person alive - or at least stronger than Dwayne 'the Rock' Johnson - his biggest idol. He is gutted by this setback, but we keep telling him that if he can beat Jeff the Jerk, then he is on the right path to achieving his dream - he is such a determined little man, and that determination, along with his always positive attitude, is what will get him through this and make him the strongest. It blows us away that with everything he has to face still, he is smiling and joking every single day.

Please keep sending us all your positive thoughts and vibes, keep us in your prayers, and even though we may not reply immediately, please do continue to send us messages - we appreciate every message we receive and the strong love and support we are feeling.

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Update posted by Asa Candussi Wilkins On May 29, 2018

Yesterday was the beginning of the fight against the tumour that Liam has named Jeff the Jerk (apologies to all the Jeff's out there, it is nothing personal, I assure you!). We started off with two rounds of different types of chemotherapy - the first lasting an hour, the second a whopping 4 hours. The 4 hour drug is then repeated today and tomorrow.

So far all is good, but no serious side effects are expected the first few days. It is boring as hell though - even with the ladies from the Red Cross School offering classes in literacy, music, math - and the dreaded Mandarin! 'No more classes' is shouted from Liam's bed frequently, but in all confidentiality, I think he enjoys it - except for the Mandarin. We have also had visits from the Children's Cancer Foundation's social workers, specifically Phoebe seems to have taken a liking to Liam, and whenever we have to step out, she comes in to sit and play games with Liam - which is not an easy task when you're facing a child who makes up new games from the ones you have on offer!

Liam is in good spirits, jokes with the staff and asks a myriad of questions - he is taking an active part in his treatment and wants to know what they're doing to him.

Thank you to everyone who has or has tried to donate, I think it all works now! We will continue to write updates here, so please do check in if you want to follow Liam's fight against Jeff the Jerk!

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Get well soon, Liam! Stay strong, Asa!

Sarah Turner

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Your story touched our hearts b/c our family is also all too familiar with the K8N, K8S, and K10S wards at QMH. We recently went through there with our daughter as well and still go back regularly for check ups. We know how amazing the staff there can be, while at the same time how challenging the lack of bedside manners can also be. Praying that LIam is getting better slowly and surely and for courage and strength for your family. Someone once told us "you don't know how strong you really can be until it's your only choice." By the sounds of it, you are doing an amazing job supporting Liam. Keep up the great work!

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