Liam’s fight with brain cancer

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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