Ayla’s journey-LCH

Friday 5th January 2024 - Round 16 of chemotherapy

Just like that we’re already into a new year. This morning Tom worked whilst I took both girls to the hospital and just when we decide to switch things up our usual hour there was an hour longer ending up with me carrying both children 😅 but we got there in the end.

Aylas access to her port went perfectly and then she was seen by her paediatrician who said Ayla was looking really well. She finally got her dose of vinblastine and we were off. As soon as we jumped in the car both her and Ellyanah fell asleep from all the energy they used in the hospital.

Ayla had her ears checked 4 weeks post the clean the ent in Brisbane performed. Her ear has finally been discharge free for a month! He said it was looking really good and clean instead of wet and full of gunk. They’ve now decided to continue routine checks on her ears to avoid infection as bad as it had gotten when we went to Brisbane last.

09thJan2024 - Tuesday Ayla had a follow up hearing test and finally having some good news come back and her hearing is normal and back to a level that won’t affect her devlopment. They think the amount of discharge is what caused her to fail the hearing test. Her left ear ( the bad one) has a little pinhole within the eardrum so we are to keep her ears dry for a little longer until it’s all healed up.

But happy for us to start the new year with positive outcomes 🫶

15Th DECEMBER - ROUND 15 of chemotherapy.

We left Townsville early to be able to get to Aylas appointments and have control of the situation if the cyclone was going to be within our area.

We landed Sunday and Ayla was fine but come Monday midday she became unwell and started showing us signs of her being in pain and not herself. First thing we did was check her temperature she was over 38.5 which meant a trip straight to Emergency. Luckily we were ready in Brisbane when this all unfolded.

Tom and I had to split up, Tom took Ayla and she was quickly accessed and bloods were drawn so they could assess what was going on. Her bloods came back normal so they had to do more investigating. She was admitted to 11B the oncology ward at QCH where they began more testing. She had respiratory and Covid which had come back normal and she had her bad esr swabbed which came bag with all sorts of bacteria growing.

Ayla had ongoing temps for over 24hours, she was monitored and given antibiotics through her port and orally. Her ear was causing her severe pain, she couldn’t lay flat, she couldn’t lay on the ear, Tom and I couldn’t touch it or look at it which she usually always lets us do. We knew this was all linked with her ear but obviously things had to be crossed of to be sure it was.

We were worried that she would miss her scans which we travelled for and everything being pushed back. But come Wednesday morning the doctors decided to still go ahead with her scans as her resipratory results were fine.

Prior to her going into her scan we had an ENT team chat to us about her ear and what plans they had for her.
The plan was
- To clean as much gunk out of her ear
- Be able to see if her ear drum was okay
-Perform a biopsy so we have an idea of how to treat.

Wednesday she fasted from 6-1pm which if you know Ayla she loves to snack and eat so she gets quite HANGRY.
Prior to her going under GA her port stuffed up so they had to place a cannula in her arm to put her to sleep. She had her scan and the ENT doctor went in and did what he had to do. An oncology nurse had to go in and take Aylas port out of her chest and place in a new one as it wasn’t aspirating.

At 4pm we went to collect Ayla and the ENT met up with us and let us know that her ear was severely infected( LCH presents its self as Otis media which is a type of ear infection). However they have suspicions that LCH is growing within her ear canal and creating granulomas which is causing blockages making it hard for the ear to drain and be dry. He said we will get results in a week or so from the biopsy and he also said her ear drum is fine but just so much came out of her ear which was causing so much pressure for her. He packed her ear with a wick and gave instructions to do drops on her ears and not to get it wet for 4-6 weeks. He will now touch base with Townsville ENT to perform regular cleans to prevent it from getting so bad again.

On Thursday the team came around and gave us such good news after the rollercoaster we have had at the beginning of the week.

Her tumours have shrunk in size again, her rib tumour is no longer present and she is good to continue treatment as we have for another 6 months. But if anything grows larger or new ones appear she will then change treatment line. Such positive outcome for us after a really tough time in the hospital.

They also said the temperatures were caused from how bad her ear was.

At around 5:30pm the doctors finally decided to give Ayla chemo as they were going to today which would’ve stuffed us around as we are flying home and she had an appointment with the ENT in the morning.

As usual her port decided to be a PAIN and failed to work so our poor darling had to be reaccessed again which was really hard for her as she already had cabin fever, had little to no sleep over the last few days and already had to have the port changed prior.

But we are so pleased with her results and feel a little relieved and just another step closer to her healing and these terrible tumours leaving her tiny body.

Next update will be when her next chemotherapy is due which is in 3 weeks time ❤️❤️

24th NOVEMBER 2023 - ROUND 14 of chemotherapy.

Today went just as planned, Ayla had her height and weight measured and she was looked over by her paediatrician Dr.Siva and he said Ayla is looking well.
She’s 15.5kgs and 90cm tall.
Ayla had her two beautiful nurses Nadine (left) and Laura (right) who she absolutely loves being around ! They always know how to put a smile on Ayla and Ellyanah and we’ve been super lucky to have such caring and loving nurses throughout this journey we’re all on.

Earlier this week Ayla had a hearing test conducted which showed she has mild hearing loss, they believe it’s due to all the fluid in her ears but still want to go ahead with her having hearing aids to help her. She’ll have a test conducted at hearing Australia and be fitted for hearing aids there.

Today was her last chemotherapy session in Townsville before we head back to Brisbane in December for her routine scans to then dictate the future treatment plan.

Fingers crossed we have good news leading into Christmas and hoping it’s all going well ❤️

3rd November 2023
ROUND 13 - 3 weekly chemo

Aylas chemotherapy went smoothly this time round, we were in and out for treatment and she’s been travelling well with it all.

Next week left to go of another round

ROUND 12

UPDATE - 6 weekly visit with specialist

On the lead up to Aylas appointment we have had ear issues again with the left ear due to the tumor in her mastoid. Her ear was constantly leaking with green/black discharge turning to a then creamy discharge to blood. She was put on antibiotics and ear drops for the week to clear it up however her ear is still leaking. She has a follow up appointment with the ENT team at TUH to manage this.

Otherwise Ayla has been very well. She had her PET & MRI scan conducted on the 11th which was successful.

We had Aylas specialist appointment to find out the news we have all been waiting for.

Ayla is now in maintenance phase due to scans showing there was partial decreased which means treatment is doing its job. THE NEWS we were wanting to hear.

Maintenance phase will consist of chemotherapy once every three weeks with five days of steroids 3 times a day starting from the day she has her chemotherapy.

We return to Brisbane in 6weeks for another set of PET and MRI scans. If there is still decreased we will remain on the vinblastine and prednislone but if there is no change and growth within her lesions then we will have to switch over to a harsher chemo and medication to go along side with it.

Ayla has her chemo today and everything went smoothly ❤️❤️ hoping things stay on track but we are also prepared for anything that will get thrown at us.

We are very appreciative of the ongoing love and support we receive continuously from everyone it really is heart warming.

29th September 2023- Round 11

Back from family visits and we’re into the hospital!
9:40am arrival and no draw back of blood again so in they place Alteplase and we waited for an hour for it to do it’s thing and then we had blood draw back.

Ayla had a great time with her cousins and it was a nice time to spend away from hospital visits. She turned two last Tuesday and enjoyed her birthday surrounded by family and a day spent at the beach.

We head to Brisbane in two weeks to see if there are any improvements which will be the big decider if we’re in maintenance phase or another block of chemo.

Ayla had abit of a accident at the hospital 💩 and got to wear her hospital outfit 😂.

We are going well as a family and starting to feel some sort of normality.

15th September 2023 - second block round 10

This morning we went in early at around 8am and Ayla had her godmother Maddy come along to support as Thomas was prepping for us to travel down south today to meet up with his whole family to spend some time with them.

Ayla had nurse Phil and nurse Jesse for treatment today and it was an absolute breeze. Went into the treatment room and Phil accessed her port within seconds that Ayla didn’t even feel it and blood drew back through her line straight away !

She also got her snuggles from Maddy straight after ♥️

She was given her dose of vinblastine for 10minutes and in the meantime watched her wiggles that she is seriously obsessed with at the moment.

They made a record of us going in and out within 1 hour for treatment which was amazing considering the last two weeks we spent over 6 hours in the oncology ward with all the complications.

Ayla got to get some presents from the gifts cupboard for her bravery and because her big second birthday is next week 🥹🥹 our baby is already going to be 2 😭😭😭.

We will be heading to Brisbane again in October so Ayla will have one more week of chemo as per schedule so instead of having the 6 weeks it will only be 5 due to the previous week of her not being able to have it.

We are looking forward to being with Tom’s side of the family to take a step outside of our chaotic life and enjoy good quality family time with our loved ones

Update - The Alteplase WORKED !! We got blood draw back in the line and things are back to working 😌. Such a long time at the hospital today but glad things are sorted now.

8th September 2023 - Second block round 9

Last week was our off week so we missed that week of chemo for Ayla.

We found out our issue with the port Ayla actually has a fibrin sheath at the end of her line, so basically a little blockage of fibres.

Ayla had an X-ray this morning and the after that Nurse Phil accessed Ayla and then we took her back to get a linogram to ensure that anything going through the line was actually going through the port which it did beautifully! But because of the blockage they are unable to aspirate any blood back which they will just do a finger prick to get bloods instead.

Ayla was able to be given her chemo without any issues, we now are having them place Alteplase through her line( roughly 1ml) so it just sits in the line for an hour to clear out the fibrin sheath. If this works they will be able to draw bloods.

Ayla was extremely happy to have the support of her Maetou around and it was the first time for her Maetou to be here for it.

We are back on track again! We are so so so relieved!!!!!!!

Update- today we were unable to do chemo, they didn’t want to access it a fourth time. She had a linogram conducted and it showed that fluid was leaking out of the port.

They have decided to give Ayla a break as she’s pretty upset and so are we. The plan is to try again next Friday but before she has the chemo she will have X-rays and an ultrasound once she is accessed to ensure everything is working correctly.

Today was the safest option to not go ahead with the chemo because there would have been a huge risk of chemo leaking throughout her body.

Abit rough the nurses were definitely feeling down too. But can only move forward from here and be as positive as we can be 🤍

01 September 2023- Second block Round 8

Todays treatment day has been quite traumatic, Aylas port had to be accessed three times due to the line not bleeding through.

Today really set me into tears watching Ayla scream and cry in pain, she never really states that her chest hurts but this time she did.

Our nurse is highly experienced and felt that it was not safe to place chemo through Aylas port as the needle was not sitting in place and the line was slow to bleed through.

This has occurred 4 times now in the past and they’re starting to think something isn’t right with her port.

Currently about to try a third time which is quite upsetting that I’ve decided to stay out of the room and tom go in with Ayla. ( failed no draw back of blood in the line)

We are currently waiting now and will keep you updated on the next plan ahead 💔

24 AUG 23
•SECOND BLOCK - ROUND 7

This morning we walked over to QCH for Aylas first appointment which was with her ENT to check her ears and they weren’t worried about it but will just have regular check ups.

So the news we’ve all been waiting for was the see how Aylas first block of chemo went and this was the summary from the medical imaging department below:

Three sites of mass like signal abnormality arising from bone and involving mastoid part of the right temporal bone, lateral aspect left temporal bone and lateral aspect left frontal bone with central T1 hypointensity, T2 and FLAIR hyperintensity, and marked surrounding increased contrast enhancement at these sites consistent with Langerhans cell histiocytosis. Good interval reduction in size of all three lesions compared with prior MR stud 20/06/2023 consistent with treatment response. No new sites of disease.

Good interval reduction in size of all three lesions compared with prior MR study 20/06/2023 consistent with treatment response. Comparative maximum short axis dimension of the three lesions:
right mastoid 16 mm (previously 25 mm)
left temporal 16 mm (previously 25 mm)
left frontal 11 mm (previously 21 mm)

The above measurements were of all tumours within her skull. There was no change in size with the other tumours within her body however it would be very rare for all of them to be completely gone.

Plan forward

Ayla will be on another 6 week block of weekly chemo and 3 day bursts of steroids instead of a full week, however the steroid dose for the 3 days will be slightly higher then 1.5ml. After this 6 week block we will return back to her specialist in Brisbane for another set of scans in October.

Ayla had her first vinblastine bag of her second block of chemo which we had issues again of the port not bleeding through the line but we got it solved in the end, they took bloods for samples and she ended up falling asleep within the last five minutes of her bag and then sadly was woken to her de access.

Thanks again everyone for checking in on us and the amount of support we have received is absolutely unreal. We are very thankful and grateful to have you all part of our lives 🤍

SCAN DAY - 23 AUG 23
Today we woke at 5am to give Ayla a feed before she had to fast but like every kid they never eat when they need to so she didn’t really eat much.
We went in at 11am and they accessed her port to put her under by 1pm.
She had a PET scan and a MRI all conducted whilst she was sedated.
Everything went smoothly and she woke up way more chilled out then previously.
We will have results back from her treating doctor tomorrow at 11am so once we know we will let you all know what the plan ahead will be for Ayla.

11th AUGUST 2023 - ROUND 6

This morning was the first time where the access of the port did not draw blood back through the line. Unfortunately Ayla had to have the needle removed and reaccessed again which worked in the end( THANK GOD).

After that happened they were concerned at the start that the port had flipped which can happen to some patients and if it does occur it means undergoing surgery again to flip the port back over but luckily that wasn’t the case. Ayla was very upset which was quite hard to watch the nurse having to do it again.

We had a little friend in the same room as us named Nathan who was another child that sang K-POP for Ayla which was super cute and made her laugh and smiled.

Ayla has developed a limp in her walk so the pead had a look at her and said she wasn’t too concerned as it’s not causing any pain, Aylas ear has started leaking abit again so they swabbed that too and the pead believes Aylas bone is starting to grow where the lesion ate through at the front of her skull as it seems to appear less sunken.

Today was the last day of Aylas first chemo block which is a relief. She now has a break week and we will head to Brisbane. Once the PET scan is complete we will have direction of what the next plan is.

Aylas weight is 15.3 kg so only 300grams of weight gain which give us an indication the steroid wean is working.

After Tuesday Ayla will be off most of her medication except for Septrin as she will need to continue it.

Will keep everyone updated when we know results from her PET scan.

Thanks everyone 🌞🤍

04th August 2023 - ROUND 5

Just wanting to share what Aylas medication looks like in a week.
The following below is a list of what she takes.

Prednisolone -works by weakening your immune system. This action blocks chemicals that normally cause inflammation as part of your body’s immune response, and can help decrease inflammation in many parts of your body.

Ausfam- Belongs to a group of medicines called histamine H2-antagonists. These medicines work by reducing the amount of acid made by the stomach.

Septrin-This is an antibiotic. It is used to prevent and treat a type of chest infection called Pneumocystis Jiroveci pneumonia.

Ondansetron- Used for preventing nausea and vomiting from chemotherapy.

Numit- Numbing cream.

Osmolax- To relieve constipation.

Monday - Wednesday Ayla had 3 doses of 1.5ml of prednislone a day, however she has just started the weaning process and is now on .8ml. She also has Ausfam once a day and Septrin twice a day morning and night.

Thursday-Sunday Ayla has 3 doses of .8ml of Prednislone and the Ausfam once a day.

Friday- includes the extras as it’s chemotherapy day. She has ondansetron an hour before and Numit placed on her port with a Tagaderm an hour prior to arriving. She also has Osmolax beforehand as she seems to become constipated after her chemo session.

Today was a smooth session, we went in and Ayla had her port accessed, treatment went well and so did deaccess. Today was Aylas PRIZE day, every week she places a sticker on her chart to mark off her days she’s had treatment. On the 4th week she gets to choose a prize for herself from the prize cupboard. This is to reward her for her brilliance and bravery during every treatment she’s had.

Aylas weight is now 15kgs and height is 89cm but her weight should reduce now due to her appetite dropping from the steroid wean.

We had a studying doctor come and visit us as he had never heard of what Ayla had and asked us about our whole story and how we figured out that she had LCH, what her treatment is now and her signs and symptoms leading up to her diagnosis.He was very interested and curious about it all and quite blown away.

Another week down and one week to go of chemo next Friday and then Ayla will have a break week and then have her scans the following week.

We are so lucky to be her parents and be there for her through it all. She is our hero and our inspiration 🤍

28th July 2023 - ROUND 4

Just like that and this week has already flown by! This morning we all went to the oncology clinic as a family which was nice.

Ayla had her numbers done to see how she’s going and she’s gained 700grams since last Friday so she’s is a total of 14.7kgs. But this is only due to the steroids, the weaning of steroids start on Wednesday so her dosage will drop meaning her appetite will go back to normal.

Access this morning wasn’t as smooth as last week as Ayla wasn’t really in the mood today so she fussed a-bit which is totally fair. But Nurse Phil blew some bubbles which gave great distraction for her and helped her calm down.

Again back at it with the snacks and Ayla hooked into the pumpkin risotto her daddy made her during this week 👌🏼

We’ve notice the lesion behind her right ear has also sunken in her skull which tells us treatment must be working.

Only three more weeks of steroids and chemotherapy until Ayla gets her PET scan to tell us how well treatment has worked.

Thankyou everyone for the love and support 🤍🍀