Madeline's Hair with Heart challenge

Days leading up to the FINAL cycle and Cycle 6 Day 1-3

Sunday 16th Feb

Maddie was going to stay with her Oba to spend some time before her final chemo cycle, but she didn’t stay very long as she had a really runny nose. Shame as I’m sure her Oba had a lot planned for them to do together.

Monday 17th Feb

Maddie’s nose was worse and she actually had a fever of 38.3. Once she has a fever though we need to take her to hospital. So before noon, we called the hospital to let them know about Maddie and they advised us to head in and go straight to OTC, from there we will be admitted to a ward, we just needed to wait to find out which one. Her port needed to be accessed so if they needed too they'd take bloods they could and they gave her some fluids to keep her hydrated. Marshall and Andrew went home not long after bringing us some lunch as there was no reason they needed to be there as well. At least at home they would be comfortable and be well rested.

By 5pm we were taken to our ward. We stayed in the Variety ward again. Very pleased with this. Everyone there is so lovely! Like I’m sure they are in all wards. Madeline’s God mother brought us some dinner and stayed with us for a couple of hours. It was nice having the company. Maddie loves her Ninang Mandy! 

After Mandy left we didn’t stay up too long. Maddie and I were really tired so we went to sleep early. 

We were almost at the home stretch of not needing to use our “go bag” (Hospital bag). We tried so hard to make sure she didn’t get sick.

Tuesday 18th Feb 

Rookie error on mum's part. I just forgot that she had fluids going in and she was drinking a lot. I knew I should’ve changed her nappy during the night after an obs check from the nurse. But I was so tired, I forgot! Poor thing had 3 accidents in the span of 12 hours! 1 before bed, 1 around 6am and then one not too long after that because she was just drinking so much she had so much extra fluid coming out. Poor little lady. Needing to isolate. Continually staying in bed. Tv, books and tablet time. Andrew and Marshall visited for a little bit which was nice. Her Ninang Mandy visited again and she ate lunch with us. Plenty more obs checks and they even needed to weigh her nappies. By the afternoon we knew chemo would start tomorrow, just weren't sure when and if we’d be discharged after it or if they’d want us to stay 1 more night. 

Wednesday 19th Feb

6th cycle Day 1 -  Bloods done early so we can get results earlier so the Drs can decide if we start chemo today. So there was still a lot of waiting around. Andrew and Marshall visit and drop us some food, but decide to head out while Maddie has chemo and go to the pools close by so they can just head over when we’re finally discharged. But Marshall had a little accident in the pool, which caused it to be shut down. They ended up going home to clean up. Drs were happy with how Maddie was going and since I didn't have any concerns they were happy to discharge us straight after chemo. It was nice to head back and be home and sleep in my own bed. It was hard sleeping on the “chair bed” thing they had in the room. Last time we stayed at the Variety ward our room had a single murphy bed which was comfortable. With the chair my legs were lifted slightly but I could actually lay down, so I was pretty much curled up to sleep.

Thursday 20th - Friday 21st Feb

Final days of chemo for this treatment plan. Marshall and I stayed home as he started getting a runny nose and it wouldn’t be good if we spread the germs. Poor Maddie, Thursday early morning she was sick all over herself and bed. Poor thing. Needed more anti nausea meds. We had to do a proper clean up to make sure nothing was toxic and we all had a bath and cleaned all sheets properly. Finally getting her to sleep in the living room. Marshall did wake up too but he ended up sleeping through the rest of the commotion. We needed to make sure we stay on top of her meds so this doesn't happen again. She slept through most of the time the treatment was happening. Which is good. Gave her energy later on. OTC gave her a Bluey toy set on her last day. Which is so nice. She and Andrew were both matching in their Bluey tops. I’ve had the pleasure of being able to bake for some of the departments and wards to say thank you for everything they do. I hope to continue providing them with baked goods when Maddie has check ups.

Fingers crossed this is actually the last. It now all depends on how effective the chemo has been during the last few months. Madeline will continue to be monitored. Have EUAs, MRI and check ups. I believe up until around her 5th birthday if not just a little more after.

Chemo cycle 5 & procedure days - Almost there

20th Jan

We had a break from being at CHW - woot! Maddie had an Audiology appointment today so the Dr decided to see her then too. So the day started with a blood test at 8:30am, hearing test at 9:30am and finishing off at Oncology to get the result of the blood test. Less days at the hospital means less stressing poor Maddie girl out. When we walk from the carpark now, she knows where we’re going so if she isn't in the mood, we have a really upset munchkin on our hands and we’d prefer not to. 

28th Jan

Standard blood test for Maddie the day before chemo.

29th Jan

Chemo cycle 5 day 1 - Day 3

Nurses at Oncology usually check on the kids. Check height, weight, blood pressure, temp. Standard procedure for most visits.

Maddie wasn’t losing weight drastically. Sometimes she’d be 100g heavier. So Drs were happy with where her numbers were at with these checks and her blood tests. Thankfully Maddie didn't need to do an EUA on the same day. Just chemo today and this week.

Monday 3rd Feb

Nurse visit for Maddie’s injection.

Wednesday 5th Feb

Maddie was scheduled for her EUA procedure today. We met another little girl with retinoblastoma and heard about her journey. As resilient as these kids are, it's never easy to hear about their journey, but then you see how well they’re doing and you just know they’re all superstars! Also, briefly met another little boy with retinoblastoma who has only recently been diagnosed and at the beginning of his journey. 

Sunday 10th Feb

We noticed a bite on Maddie's elbow and it looked like it was getting worse so we took her to CHW ED. Luckily there was no one in the line for Triage 1, we were taken straight in. They needed to access her port so they could do a blood test and possibly give her meds. Luckily we didn't need to stay overnight or too long. We needed to keep an eye on the bite and give her antibiotics. 

Wednesday 12th Feb

We prepared ourselves for a BIG day. Both Madeline and Marshall with appointments at CHW. Marshall needs a blood test and has an eye exam but with our kids, they have such dark eyes that dilating them takes a very long time and more drops and resulting in waiting, waiting, waiting, and a really upset bubba.

His appointment was at 8:00am and we finished up about 10:30am. I took him straight to pathology as they’re usually busy, but good thing for us they weren't today.

Madeline needed to be at OTC at 7:30am and from there she'd go to her MRI appointment. Timing For the day was on our side. We were out by noon.

First treatment for 2025

Madeline’s uncle has done it. He’s done the chop for her since we passed our $5k target (from before)! Thank you so much Uncle Tyson for this. I hope you like your new do! We do! It’s such an amazing gesture!

Before this cycle of chemo we wanted to make sure Maddie had nice days leading up to day 1 as that was going to be a long day. Chemo in the morning and then EUA procedure. So we went to Sydney Zoo. She loved it. We were there first thing in the morning so there wouldn’t be too many people around and she could enjoy herself and go at her pace. 

Tuesday 7th Jan

We went to our local pathology to get Madeline’s blood test done. Doing it the day before saves us time doing it on the same day. If we did it on the same day, we’d need to go to pathology, wait and get it done. Go back to Oncology, wait until the results come back and continue to wait for the chemo medicine to be prepared and then head in to just start. Putting the line in takes time as the poor little lady still fights this as you would as a 2 year old not completely understanding what's going on. At least we cut wait times and as soon as we get to oncology we’re basically in and starting by 8:30am.

Wednesday 8th Jan 2025 - Saturday 11th Jan 2025

Chemo cycle 4

Chemo seems to be hitting her harder this time around. Madeline is asleep for most of the treatment. Poor thing has been feeling sick too. But she gets through the next few days like a true champion. She was even gifted items from The Kids with Cancer Foundation. Such a lucky girl. Well all the kids are. This foundation always makes sure there are boxed packs for the kids. Each containing toys, snacks and colouring in books to keep them entertained.

10th Jan

We received Maddie's genetics test results back. She has a novel Pathogenic variant in the RB1 gene at low levels in the blood. Her diagnosis, Mosaic Retinoblastoma. She is at increased risk of developing non-ocular tumours so she will need on-going clinical monitoring. Mosaicism occurs when someone has a mixture of cells, some with a gene change and some without. In mosaic retinoblastoma, the RB1 gene is altered in some of the cells in the retina. If the other normal copy of the RB1 gene in a retinal cell becomes damaged, a retinoblastoma can develop. Mosaicism is a form of heritable RB1-/- retinoblastoma that cannot be inherited because it only happens at or after conception. 

A new year...

Christmas 2024. Maddie was definitely spoiled. I couldn’t even count the number of presents she received. Her brother too, but, more so, Maddie.

She had such a wonderful time with her family. Lots to eat! Pretty usual at any Filipino gathering. 

Not long after, poor Marshall wasn’t feeling well. He had a high fever so we kept him separate from his sister. With a GP visit and ED visit, swab and other tests done and they couldn’t say what it was that gave him a fever. His Dr at the Hospital said his right ear was red. So he started taking antibiotics which, within a day dropped his fever and he was semi acting himself. Not 100%, but better than him being super lethargic. 

We left our NYE celebrations early as the kids were so very tired. I know Maddie wanted to play with her cousins until midnight, but we know she needs to rest.

Wednesday 18th - 23rd December 2024

It's time!

Tuesday 17th December 2024

The day starts off with Maddie braving another blood test. Our little toughie tough! Then it’s off to Just Cuts, Blacktown to get the deed done. Andrew went first. Maddie was playing around and when he was almost done we had her stand next to his seat and we asked her “where’s dad?” She repeated what we said and turned and looked at him and she had a big smile on her face. She knew. The shaved head didn’t bother her whatsoever. I was really interested to see her reaction to my head and Marshall too. Andrew didn’t take too long. She was loving seeing her dad with the same hairstyle as her. It was my turn. I actually wasn’t nervous. With the heat out west today I was really looking forward to it. I did tear up before the initial cut because the reason why we’re doing this today came to mind and I couldn’t hold it in. But I had such love surrounding me that I didn’t break down. 

Maddie and Marshall knew who I was. No double takes, no looks of confusion. Just big smiles. I'm very happy that my new do didn't scare them.

Now we’re matching! Maddie, dad and mum. Shaved heads! We’ve decided on a new goal. If we reach $10k we will shave Marshall's head too! So please pass on our story and let's get to this final goal!

A massive thank you to all who’ve donated, sent gifts/food, called, messaged and those who’ve caught up with us during this time! Hearing from you all has been wonderful. Truly amazing! It’s hard to put it into words at times. An even bigger thank you to our families who’ve been there from the very beginning. Thank you for everything. The support has helped us get to where we are today. Physically, mentally and emotionally. We love you all!

Colouring of Andrew’s new age mohawk!

Saturday 14th December 2024

So the mohawk style wasn’t what we were expecting, but it’s still a mohawk nonetheless. We purchased some coloured hair chalk so our highest $$ supporter could work on his canvas. Thank you to Pete, for his ever so generous donation! Even though we had passed our target, you surprised us with such an amazing donation figure, we couldn’t just say the words THANK YOU! So we hope you enjoyed yourself today.

Not just colouring Andrew’s hair but he made sure it resembled a mohawk he was happy with. Thank you to Rav & Nikki for letting us do this at your place and sorry about the hair. We hope you all like it. If you need a mohawk, chalk colouring or hair style advice, shoot me a message and I will forward it to Pete for you and he will be in touch!

Rest weeks...

These 2 weeks were much better. She was herself again! She’s eating, drinking and she sleeps in a little longer and has a longer nap during the day, but her being tired is normal. Otherwise she’s doing really well. Her Dr is very happy she isn't just lounging around. He’s so glad to hear that she’s singing, dancing, and playing at home. That she wants to go out and about.

Before Maddie’s 2nd cycle, we had reached our fundraising goal! So super happy that we have such amazing family and friends. Won’t be long now until Andrew gets a mohawk and we both shave our heads.

Friday 13th December 2024

City adventure! 

We haven't been to the city for a long time. Also, we wanted to meet some of Andrew's work colleagues who've been so amazing the past 2 months, with everything going on with Maddie. 

It was really nice to be out and about with the kids, my parents, Andrew's mum and we even met up with a friend and her handsome baby boy. It was a really hot day though and I wasn't sure where to go so I sadly dragged everyone around Barangaroo. But we found somewhere indoors to sit and something to eat.

This afternoon Andrew thought it would be the best time to get his mohawk. The barber did too good of a job. But it was still a mohawk. Not what we envisioned. But we'll take it. 

Chemo Cycle 2…

Thursday 28th November - Sunday 1st December 2024

Day 1 & 2 - We were in early, as we knew that it would take some time to add the line to Madeline’s port. We didn’t wait long this time. Poor Madeline having to go through all of this. Still not completely understanding what's going on. But she’s truly amazing! She was hooked up to a machine for 3 hours for 3 days straight and she just kept playing with the toys they provide at the hospital. 

Day 3 - The treatment was given in a ward as the clinic is closed on the weekends. We set up in a nice small room all to ourselves and Madeline watched Mickey Mouse and Bluey and played with her toys. Such a trooper and doesn't complain! Makes it easier for us. After the 3rd day of chemo the line needs to be removed. Poor thing. And she will need to do it again for her next cycle and every cycle she will need to do. Still fingers crossed its only 6. But again, she is truly amazing, so tough.

Little Marshmallow spent the day with his aunty and she wanted to keep him for the night. He loves his aunty so we have no issues there. 

Day 4 - This time we didn't get a home visit. We went back to CHW to get the injection. Done super quick. In and out.

A really big day...!

Wednesday 27th November 2024

5:30 am wake up call for mum and dad. Shower, make breakfast, make sure bags are packed and get kids ready as they are both heading in today. But, as usual, it's an appointment day and they both decide that no matter how noisy we are they will sleep in. Turning lights on doesn’t work. Playing music loudly in the kitchen does not work. So we had to do what everyone tells you not to do, wake a sleeping baby/child. Luckily they were both cooperative. So the run sheet for the day was suppose to go like this:

9:00 am - Madeline - chemo starts

9:30 am - Marshall - eye appointment

12:00 pm - Madeline - check in to do EUA (Exam under anesthesia)

So it didn't quite go that way. We were there before 9:00 am, but we were told she needed to have a blood test first. So we went to pathology and had that done which took some time. Andrew took Marshall to the Eye Clinic for his appointment before 9:30am. We were so very lucky to have Maddie’s aunty there to help us during the day. When the blood test was finally done we went back to the Oncology clinic to hopefully start her chemo as it goes for 3 hours and they still needed to attach her line. But we waited, and waited and waited. They couldn’t start without the blood results. It was almost 11:00 am when we were finally called up. We already knew that she wouldn’t start her chemo treatment today as we needed to be checking in to do her procedure. We were told to head back down afterwards, which I thought he was kidding. She’s going under and it's not like we will get checked in straight away at 12:00 pm, she heads into the operating theater, procedure usually takes 45 mins to an hour, she wakes up quickly and then we will be back down by 4:00 pm which is when the clinic closes. He keeps telling us to head back to the clinic as soon as she's finished upstairs and reminding me that we’re expected upstairs at 12:00 pm. So I just left it by saying ok fine we will come down as soon as they discharge us upstairs. So, now the next 45 mins opened up. We headed straight to the Starlight room so Madeline could play and enjoy herself. I left Madline and her aunty there and went upstairs to keep Andrew and Marshall company. Poor Marshall was seen late as well and we had to wait longer as he has really dark eyes so they take longer to dilate and he needed extra drops added. Andrew had gone to Maddie so he could get her checked in so I stayed with Marshall. The Dr concluded that Marshall is looking good and he wouldn’t need another check for another 3 months. 

Marshall couldn't head upstairs with me so his aunty swapped with me so she could look after him while I waited with Andrew and Maddie. Poor little lady. It was almost 2:00 pm and she had been fasting since 7:00 am. She was so hungry and tired. She couldn’t even have water. It was finally her turn.

An hour later we headed to the parents' waiting room. We didn't wait long to hear that everything went well. That it looks like the treatment is working and the tumors haven't spread. Amazing news. With Christmas and New Years around the corner her next EUA is scheduled for 6 weeks later. and At this point in time Maddie is scheduled to have her 4th cycle of chemo start on the same day. So another big day, but hopefully everything works out this time around. We will make sure to do her blood test the day before so there is 1 less thing to do on the same day.

We meet another couple in the same boat with a few differences. They ask about Maddie and before we can ask about their little one we get told Maddie is waking so we say our good luck and goodbye and that we're sure to see them again and rush to be by her side. She continues sleeping in Andrew's arms. As soon as she wakes we see if she's hungry and thirsty. Because if she eats and drinks a good amount we'll be discharged. In the recovery room we meet a young boy who is waiting for his mum to bring the car around to the front so we doesn't have to walk all the way to the car park as he had knee surgery and he ask what was wrong with Maddie, when we told him, he replied with sick kindness and respect. “She'll beat it. She'll get better”. I started to cry. He was shortly wheeled away by a nurse to go to his mum. We didn't wait too much longer after that because Maddie's obs was looking good and she was eating and drinking. No concerns so we were discharged. Aunty and Marshall were downstairs waiting for us. 

Week 3 - rest week and SHAVE!

A really long week… Pt 2

Thursday 14th November 2024

Maddie seemed ok but then we got worried around bedtime. She had done a few wet

#2s, bedding had to be changed and she still wasn't eating much. She wasn't taking her antinausea meds and would be a little sick. So we call the Hospital and they advise us to head to ED at Westmead. We are seen in no time and put in an isolated room as Maddie’s immune system is low. The parents are stressing out that she’s been vomiting, poops aren’t good, she hasn't been eating or drinking. But would you believe, as soon as the Drs and nurses check her obs and we wait for a room as they want to keep her overnight to be monitored, the little lady starts eating and drinking. She ate all the food I had packed! Happy days yes, but still they keep us overnight. Since they need to take bloods and may start her on IV to keep her hydrated, the poor thing had to endure having her port accessed. We were provided with an emergency kit for scenarios like this. A needle to access her port, numbing cream and clear sticker dressing. So we have everything we need in case ED doesn't have the right size needle handy and we can make sure Madeline is comfortable and not feel the needle. They also educate you to have a ‘go bag’ ready, so in an emergency you’re out the door and on the way faster.

Friday 15th November 2024

Only 1 parent is allowed to stay. Mummas on it! We ended up staying in the Variety Ward. Which we’re pleased to mention that the money we raise will go to the Variety ward. 

Maddie has a nice long sleep in but isn’t interested in her breakfast. She ate some bread, but I was happy she was drinking water. There was a lot of waiting around, but the poor thing had another big mess. Thankfully we were at the hospital so they were able to see and monitor her. They also took samples so they could run tests to rule out that this was a side effect of the chemo. It turns out Maddie had Adenoviruses which most often infects the airways leading to cold-like symptoms which she didn't show. After the poo-nami cleanup, we thought that they’d be keeping us another night as it was late in the afternoon, but they were happy to discharge if we were happy to have Maddie ride out the virus at home. 

We requested another flavour of her medicine as she was definitely not interested in the cherry flavour, so they provide us with the banana flavour. Which is somewhat still a fight to get her to take but, not as bad and she’s keeping it down.

A couple of hours before we were discharged, it's like nothing happened. Maddie was herself again. Eating, drinking, playing, singing. So we were very happy to take her home. And when she was finally home, where she was more comfortable she seemed even better.

The weekend to next week. Maddie was back to eating every meal, plus snacks, drinking more water and milk and being the cheeky, loud, not so little girl we know she is!

A really long week… Pt 1

Maddie is on a treatment plan called JOE chemotherapy for retinoblastoma. 

Week 1 chemo for 3 days 1 day injection

Week 2 rest 

Week 3 rest

Week 4 repeat week 1 - this depends on the results of her blood test. If her white blood cell count is at a good level, treatment will happen on week 4. But if it's too low then her treatment may get pushed back a week or 2.

Maddie has medication every Monday, Wednesday and Friday, twice a day and also anti nausea when needed.

Since Maddie started chemo we've been needing to wear gloves and throw out her diapers. She's excreting the chemicals which are toxic. We need to make sure we're protected. Plus extra hand washing. If anything leaks out whilst she's asleep, everything that gets wet/dirty needs extra steps to wash. So what we've been doing is rinsing every item, soaking it in hot  soapy water and washing it in warm water separately from anything that hasn't been contaminated. There had been a few accidents at the start of the week, but that will happen.

Monday 11th November 2024

Today, a nurse made a home visit to give Maddie an injection. It's to help speed up the growth of a type of white blood cell in the bone marrow, which helps fight infections. We need to make sure to apply numbing cream on her upper thigh so she won't feel the needle. 

Tuesday 12th November 2024

Maddie only seems interested in water based foods, which is good. A rest day today.

Wednesday 13th November 

Since yesterday Maddie has had really runny #2s. The poor thing. We thought it was due to the chemo. She also wasn't eating as much. She was drinking more than eating. We're a little worried. We kept a close eye on her. She put up more of a fight when taking her home medication. Sometimes not keeping it down.

We were back at the hospital for a check up and blood test. Her Dr didn't think it was too concerning as she was drinking water and milk. So we didn't think too much more about it. Her blood tests show her white blood count at a good level so we scheduled her next chemo cycle.

We get back home from the hospital with her aunty who wanted to be with us at the hospital as support and to also spend time with her niece and nephew. Maddie wakes from a nap. She doesn't seem like herself as she doesn't exit her room like she normally would. She just stays by the bedroom door interacting with her aunty, who then realises that she’s done a poo and there is a big, big mess! She and I spring into action as we need to follow protocol in handling toxic waste. After everything has been sanitised, rinsed, soaked, the whole shebang, we thought we’d had all the action possible. We were wrong. It was time to give Maddie her medicine. The poor thing throws it up but also everything she had eaten in the last few hours. She then doesn't seem to keep anything down, so we call ward to ask advice. The head nurse tells us to not try and give her medication tonight. It’s ok to miss, especially if she isn't keeping it down and if later on we’re really concerned about Maddie to call them back and head to ED. It might be the cherry flavour she doesn't like. After yet another whole clean and sanitise we decided to try and relax, get her calm and rested as it had been a really big day.

First cycle of chemo...

Theory put to practice...

Monday 4th November 2024

Maddie needed to have a hearing test to check it before treatment. A side effect of one of the medications she’d be on could affect her hearing. She passed all the tests so we won’t need to check for another 2 months. 

Wednesday 6th November 2024

Early start. We had to be at the CHW to check in at 7am. Maddie was fasting again for surgery to implant a chemo port, a small device that allows healthcare providers to draw blood and give treatments. Poor thing having to go under anesthesia for the 4th time at 2 years and 3 months young! Thankfully it was early in the morning so most of her fasting time was during sleep and she was pretty much in and out of surgery. Since this was her first cycle of chemo, Maddie was required to stay at the hospital for the 3 days of treatment. 

We met her in the recovery room and the poor thing was so out of it, she really wanted a hug from dad and mum. Not long we were wheeled into the ward we’d be staying in for the next few nights. We were meant to go to the ward for Oncology patients but they were too full to have us so we spent our time in another ward, which was fine. We were really looked after.

Maddie was trying to get comfortable but it wasn't as easy. But we tried to make her feel as comfortable as possible. She didn't have her usual appetite but she was eating and drinking a little. Our little trooper had high spirits. When it was bedtime she was entertaining some of the others in the room with her cute antics, singing and just basically reading the captions from Mickey Mouse Clubhouse.

Last week Port free

Within a week

Wednesday 30th October 2024

Marshall was also checked. He did a few eye tests and passed. Nothing showing concern for him at the moment. Phew.

MRI results looks promising. It shows a large tumour in her right eye and her left looks clear. Good news as this means Eyesight on the left is perfect and she is unilateral. But it's 100% confirmed to be retinoblastoma.

Madeline was fasting for her non surgical procedure was scheduled for around 1pm. So we spent a bit of time in the Starlight room. She had a blast and the captains are all amazing!

All of this happening within 7 days. 

After the procedure and gathering all the results we were given the bad news that unfortunately she has a large tumour in her right eye and a small tumour in her left eye. We won't know how much of her sight is impacted as she can't tell us. With it in both eyes it's usually hereditary so Marshall too will be closely monitored. Heartbreaking news. She's now bilateral.

How Madeline's journey started...

Tuesday 22nd October 2024

Routine eye check 6 months after squint surgery. 

Before Madeline was examined we mentioned that we noticed a sort of light/reflectiveness when you look at her right eye at certain angles. After a few eye tests and close up photos taken, her Dr said he believed it could be 2 possible things. He wanted to have an ultrasound as well as an MRI to triple check and to be 100% sure what it is.