Exactly one year ago today we got the devastating news that no parent or family wants to hear.

‘Your child has cancer’.

On 27th November 2023, Yara got diagnosed with a childhood cancer called Neuroblastoma - High Risk Stage 4 Aged 19 Months.

It was first bought to our attention when Yara's key worker at daycare nursery said her stomach felt stiff. We visited our GP and A&E and even after an X-Ray, they put it down to constipation and sent Yara home with laxatives. After a week of laxatives, Yara's stomach was still stiff so we went back to A&E and luckily we saw the same doctor we saw the previous week. The doctor knew it was something more than just constipation. We were then transferred to another hospital who specialised in bowels and they tried to flush Yara from her bottom but nothing came out. Finally the next morning (27th November 2023), an ultrasound of Yara's stomach was carried out and that's when they noticed the large mass in her stomach.

Within two days, we were transferred to Great Ormond Street Hospital and that's where Yara had:

* A Hickman Line put in to administer medicine and take bloods without the need of multiple cannulas

* Bilateral Nephroastomies to help take pressure off her kidneys as the tumour in her stomach was severally pushing on them

* A NG Tube to help support with oral medicine, milk feeds and water flushes

* A biopsy to determine what stage her cancer was

* A MIBG Scan which uses a radioactive dye to show where her tumours are

* A MRI Scan to get accurate sizing of her tumours

In December 2023, Yara went on to receive Chemotherapy (Rapid COJEC). This consisted of chemotherapy administered over 1-3 days and then a 7 day break. Yara had 8 rounds of this and heartbreakingly lost all of her hair. We were first at hospital for 5 consecutive weeks and unfortunately had to spend Christmas and New Years in hospital.

In January 2024, we transitioned home and although this was very challenging we had support from the community nurses and our local hospital to effectively support Yara. Whilst Yara was at home, we had to closer monitor her throughout the day and night as she has a Hickman Line & Nephroastomies which needed to be emptied every few hours. Each week, the community nurse would come to our home to take Yara’s bloods, change her Hickman line dressing and neproastomy dressings. After a few weeks of being at home, we all got comfortable with the nurses coming each week and what to look out for if Yara was unwell.

- If Yara’s Haemoglobin (HB) was below 70, she would need to go to her local hospital for a blood transfusion

- If Yara Platelets were below 20, she would need to go to her local hospital for a platelet transfusion

- If Yara’s temperature reached 38 degrees or above we would need to contact out local hospital for Yara to be admitted as Yara having a Hickman line makes her more at risk of Sepsis and this would require us to be in the hospital within an hour and would result in a stay in hospital of at LEAST 48 hours.

In February 2024, Yara had reassessment scans, which consisted of MRI, MIBG, Hearing Tests and Urine Tests. Her results showed that from the 8 rounds of Rapid COJEC Chemotherapy, her tumour had reduced in size and the other spots on her left shoulder and left knee had gone. The next part of her treatment plan would be High Dose Chemotherapy With Stem Cell Transplant. We were really hoping surgery would be next on the cards, but the surgeons felt surgery was still too difficult due to the tumour wrapping around vital organs. High Dose Chemotherapy consists of having your stem cells collected over 1-3 days as High Dose Chemotherapy completely wipes out your bone marrow. As this stay in hospital would be at least 6 - 8 weeks long with a lot of side effects and life threatening complications, we made sure to do as many activities with Yara as possible whilst she was in good spirits.

In March 2024, Yara had started High Dose Chemotherapy with Stem Cell Transplant. We stayed in hospital for 7 weeks and 3 days sadly over the Easter period BUT managed to get discharged 1 DAY BEFORE Yara’s 2nd Birthday! Yara had high doses of two chemotherapy drugs 4 times a day over 5 days then 1 day break. On the 7th day, her stem cells were given back to her and this is where we watched and waited for her body to recover. Luckily Yara didn’t get a lot of the side effects and had slight VOD which just required the medical team to reduce her fluid intake over a few days and introduce a new medicine which would help her liver. Yara no longer needed her nephroastomies and they were both removed which meant Yara could sit in the bath after months of only have a wipe down wash. During our lengthy stay in hospital, we kept Yara busy with Easter activities, music therapy, going to the play room and lots of visits from friends and family.

In April 2024, about a week after being discharged from hospital, Yara’s surgery date got booked in for May 2024. We were really surprised how quickly things were moving, but we were glad surgery had finally came. So again whilst Yara was well, we made sure to do lots of activities with her and with the weather getting warmer, it was easier to be outside with Yara as cancer causes your immune system to be very vulnerable to viruses.

In May 2024, Yara had surgery and 90-95% of the main tumour was completely resected without the need to remove any of her kidneys or vital organs. Yara’s surgery was approximately 10 HOURS LONG! During Yara’s recovery she very quickly got back on her feet and was eager to eat and drink properly again. Although Yara did have a virus during her recovery, once matched to the right antibiotics for her, she quickly bounced back to her usual self again.

In June 2024, Yara had more reassessments which just showed a very small amount of tumour left in her stomach. Radiotherapy was the next part of Yara’s treatment plan. Before radiotherapy commence we were able to take Yara to Peppa Pig World as a very belated celebration for her 2nd Birthday.

In July 2024 Yara commenced 12 sessions of Radiotherapy - Monday - Friday at UCLH. As Yara had to be completely still for her radiotherapy sessions this required her to go under General Anaesthetic (GA) each time. Her sessions were only about 45 minutes to an 1 hour long. As soon as Yara woke up from her GA, she was ALWAYS ready to eat and drink!

In August 2024, another set of reassessments were carried out and we were ready to complete the last part of Yara’s treatment plan - Immunotherapy. Unfortunately, we got devastating news that Yara had relapsed in her left leg and chest. When a child relapses from Neuroblastoma, there is no specific treatment plan which made it harder for us to try and figure out the best way to tackle Yara’s cancer.

In September 2024, we started a new set of Chemotherapy - BIT. This involved two Intravenous Immunotherapy/Chemotherapy infusions and one oral Immunotherapy/Chemotherapy . Yara had this chemo twice - Monday - Friday and then a two week break.

In October 2024, after two cycles of the BIT Immunotherapy/Chemotherapy, Yara had more reassessments, but again this showed that her cancer had gotten worse! The medical team have offered another combination of Immunotherapy/Chemotherapy drugs, BUT this is potentially Yara’s last option before we have to look at Clinical Trials, but nothing is guaranteed to help improve Yara’s Cancer.

In November 2024, we have asked for a pause with Yara’s treatment. The reason for this is Yara has been getting quite unwell during the winter months which we knew was inevitable due to her being immunocompromised. Our main focus is to build back up Yara’s immune system to the best of our ability so she is fighting fit again. We also want to explore Holistic Treatments that can help with Yara’s cancer before deciding about conventional treatment methods.

This fundraiser is to help raise funds for Yara’s current and future needs, ensuring we can make everlasting memories with Yara and to help relieve the financial pressures when we are admitted to hospital.

We can’t thank you enough for taking the time to read through Yara’s story and every donation we truly appreciate from the bottom of our hearts.

Please keep our beautiful, outgoing and STRONG girl Yara in your prayers.

This is her journey to recovery