Kayla's Neuroblastoma Journey this is Kayla's story

On May 17th 2021 our worlds changed forever kayla was diagnosed with cancer. our journey started the week before with a painful leg (what 3yr old dosnt have some kind of leg pain) we went to A and E as she struggled to put weight on her leg to be told its probably nothing and to keep up with the pain relief. A few days later she had some slight swelling so went back as the pain wasn't getting any better we has xrays and bloods but doctors still were not concerned and we were sent home and told if anything comes back we will phone u. 7.22 the following morning we had that phone call to say she had elevated infection levels in her blood and she needs to been seen.

This is where Kayla's journey began she saw multiple doctors and specialists and still had no answers they admitted us to the ward until we had something on the Thursday kayla went for an mri ..... we were told she had malignancy in her bones (but still no answers as to what). by the Friday we were in contact with Addenbrooks where it was decided that she needed to have a bone marrow sample taken to see what was happening we still held on to that little hope that it will be something easy. we went home to spend the weekend with our boys who are 9 and 6 it was the weekend before our eldest turned 9 not the weekend we had planned but he took it all in his stride.

Monday we headed off to addenbrooks with the hope of coming home.

Monday the 17th our World crashed being hit with the words cancer in a 3 Yr old and as her mum and dad trying to make sense to all of this, her dad went home to tell the boys while mum was admitted with kayla not knowing how long for what cancer she had how we were going to cope how was life going to happen we were scared confused our hearts were shattered but having to stay strong for their 3 children.

On the 19th we were given the diagnosis of stage 4 high risk neuroblastoma and we had 18 months of treatment ahead.

During their first week at Addenbrooks Kayla had multiple canulas, blood tests, ct scans, x rays, mibg scans, she's also had surgery to put her hickman line in so the canulas became less and all her treatment could now be put through these Hickman Lines. At the same time as the Hickman Lines went in Kayla had a tumor from her neck removed, this was 2 x 2 x1.5cm, it was sent away for a biopsy ( this came back clear ).

At every stage Kayla just amazed us all and just got on with the process at the end of that week we started her first chemo and her chemo plan is every 10 days hard hitting.

Kayla had 8 rounds of Chemo and handled it like a real warrior princess. she had her off days but she always had a smile. After the 8 rounds it was all scans again to see what was happening and wether Kayla could go ahead for surgery to remove her other tumour this was to be up to a 12 hour operation, i cannot even begin to tell you how worried we were about that? but we were safe in the knowledge she was in the best place and it can to be removed. The results of the scans and whether she was going to surgery were due on the 20th August.

She had her Stem Cell Harvest done at Great Ormond Street done over a few days, on 15th August but this was a different hospital so once again an anxious time, but Kayla took it all in her stride! She had mummy by her side every step of the way.

The results came back a very nervous wait, but all was good, the chemo was doing its job and Kayla could proceed to surgery, mixed emotions as it was a very big operation for such a tiny little person.

September 1st was a massive day they set off at 5 am to be at the hospital ready for Kayla's surgery knowing it could be 12 - 14 hours she is in surgery many emotions we were all feeling she went down at 9am its one of the worse days not knowing what was happening but 10 hours later we got the call to say she's in recovery and to be told they have got over 95% of the tumor was amazing we were never expecting that result we were just over the moon. Kayla recovered very well after her surgery but she did have some muscle wastage after not moving and being in bed for 5 days, but because of her brilliant recovery she was allowed home much sooner than expected. More scans had to be done before the next stage which is High Dose Chemo at Great Ormond Street which meant a 6-8 week stay.

On 21st September all the scans were done again at GOSH which meant another stay in London away from the family, sadly on the 24th September they found 3 more points of neuroblastoma which was devastating news, this meant that High Dose was now delayed and Kayla had to go back to Addenbrooks for 3 more rounds of 5 days cycles of chemo in the hope they can stop this! and pray that it works. Kayla handled this so well again and smashed it! she's an inspiration to us all and we certainly can learn a thing or two from her.

So after the 3 rounds she had to have the dreaded scans again!! The scans were analized and the concesus was that maybe she didnt really needed to have the extra chemo treatments?? Cant dwell on that! so with very short notice it was off to GOSH on 21st November for HIgh Dose Chemo which meant a 6-8 week stay. This was very mixed emotions, good that finally she was at a stage she could go and have High Dose but with the delays it now meant the family are going to be apart for christmas and she's not going to see her brothers in person ( thank goodness for facetime ).

Its now 8th of December Kayla is now into week 3 of the 6-8 week stay, she's had all the High Dose Chemo and its now all recovery time, she's coping well although she's had a couple of bad days with the expected awful side effects, but the smile is not too far away. She's had visits from Santa and the staff are amazing, shes actually playing today so there is a tiny improvement!!! Got to take what you can??

As a grandparent this is so hard to watch, ( harder for the parents i know ) if only we could take it away, its just not fair for a 3 year old or any child to deal with this. Its not right that my daughter and her husband have to see their daughter go through this! The tears that have been cried have been many! The family are being so strong! the boys her brothers aged 7 & 9 are just so amazing we are so proud of all of them and how they are coping! The fact they are not all together at Christmas is heartbreaking for the whole family and we are all going to miss them terribly, Kayla is in the right place getting the care she needs, and i know GOSH will make it special for them.

I have set this page up to try and help them, the expenses in this journey for the family mount up very quickly with all the travelling back and forwards to Addenbrooks, GOSH and Norwich in between. As well as the different things Kayla and the family need, and maybe a day trip out for the family when Kayla is at home and feeling a bit better. In a dream world we would like to take Kayla and her 2 brothers to Disneyland Paris for a special treat, as Kayla is Minnie Mouse Mad and it will make some very magical memories for her and the family, especially after the last few months and the family being apart over christmas due to Kayla having to stay in Great Ormond Street Hospital for 6-8 weeks. It would be something nice to look forward to for the whole family and the memories they can make together after such a traumatic time.