Our Story

Alice’s Arc was inspired by the ongoing journey of a little girl named Alice, diagnosed with stage 4 alveolar rhabdomyosarcoma, at the age of 3, in March 2015. She had 20 months of chemotherapy at GOSH and proton radiation in the US. Alice spent one year in remission before her cancer returned in February 2018. She underwent 6 months of relapse chemotherapy and a specialist surgical procedure with brachytherapy, known as AMORE, in Amsterdam. Alice spent almost a year clear of cancer before masses were detected in her abdomen and pelvis in July 2019. There were no options left. Alice died, aged 7, in October 2019, over 4.5 years after her diagnosis.

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She was given a 50/50 chance of survival over 5 years. However, relapse made these odds significantly worse – 8%. The first symptom Alice’s family noticed was a small lump on her neck, she was completely healthy otherwise. It took around 6 weeks to diagnose due to lack of knowledge available to local GPs and local hospitals about rhabdomyosarcoma and childhood cancer symptoms. Once the ideas of various infections and cystic structures were dismissed an MRI revealed a solid tumour and Alice received a referral to the oncology department at Great Ormond Street Hospital, where she was diagnosed with rhabdomyosarcoma.
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GOSH provided Alice’s probable diagnosis within a day and commenced the diagnostic process involving a biopsy, lumbar puncture, blood tests and PET scans. Full diagnosis revealed that Alice had stage 4 alveolar rhabdomyosarcoma with the primary tumour attached to the submandibular gland in her neck with positive lymph nodes and a tiny tumour in her lung. Her treatment begun immediately as the tumour was compromising her airway.

Alice was treated under the care of GOSH and Jacksonville, University of Florida Health Proton Therapy Institute. She received a combination of intensive in-patient chemotherapy, out-patient maintenance chemotherapy and radiation over a period of almost two years. The treatment involved spending 11 weeks in Florida receiving proton radiation which is currently unavailable in the UK. Proton radiation is a highly targeted form of radiotherapy – the proton beams kill the cancer cells and cause less damage to surrounding healthy tissues. This is particularly relevant to young children so that long term damage can be limited. When Alice relapsed she had chemotherapy at GOSH and travelled to the Emma Children’s Hospital in Amsterdam for AMORE which involved surgical removal of the tumour, brachytherapy and reconstruction. When Alice’s cancer was discovered in the new sites of the abdomen and pelvis, there were no curative options available. She had exhausted treatment options.

Throughout the journey Alice’s parents met a worldwide network of medical professionals and families with children undergoing cancer treatments. They became increasingly aware of the lack of funding and clinical research in to the treatment of children’s cancers. And so Alice’s Arc was born with a commitment to help find a cure with less toxic treatment options.

During her cancer journey:

This involved 4 chemo drugs called Vincristine, Actinomycin D, Ifosfamide and Doxorubicin. The first two drugs are administered via an injection in to the Hickman line. The second two are infused in to the Hickman line over a few days and nights. At the same time hydration is also infused to flush the toxic drugs out of the system. This means the child is hooked up to a machine for a number of days unable to move or play properly and also feeling very ill as the drugs take effect. All the hydration makes the child need the loo very frequently so they are unable to sleep well. The drugs were given for 8 months every 21 days over the course of 4 days and 3 nights. 

Alice went to Jacksonville, Florida’s UF Health Proton Therapy Institute for 11 weeks to receive this treatment as it isn’t available in the UK yet. This was funded by the NHS as part of her treatment protocol. Over the course of 6 weeks Alice received proton radiation every week day. Anaesthetics are required as it is vital that the child is completely still to ensure the precision of the proton beam. Alice received chemotherapy alongside this at Wolfson Hospital. Proton radiation is preferable for children with some brain tumours or cancers located in the head, neck or spinal areas as it is highly targeted and causes less damage to healthy tissues than conventional radiation.

Chemotherapy makes blood counts drop dangerously low. Drops in red blood cells and haemoglobin cause extreme feelings of fatigue and lethargy. If it drops below a certain level a blood transfusion is conducted using the Hickman line. This typically takes 4 hours. Similarly if platelets drop below a certain level a platelet transfusion takes place. It is very common for children receiving chemotherapy to receive these transfusions frequently.

VIT chemo comprises Vincristine, Irinotecan and Temozolomide and is given for 5 days consecutively every 21 cycles. Vincristine is administered as a push, irinotecan as an infusion and temozolomide in tablet form. It was very difficult to convince Alice to take the tablets and have the infusion of irinotecan as she was aware that they made her sick.


After chemotherapy blood counts drop dramatically making a child neutropenic. This means they have no immune system to fight off infections. If Alice’s temperature hit 38 degrees she went to our local hospital. Blood is taken to see if an infection is present. If the blood test is positive for an infection a long stay in hospital to recover and administer antibiotics is required. For example, chickenpox needs 10 days of treatment with a specific antiviral drug. Antibiotics are given through the Hickman line and usually infused 2/3 times every 24 hours depending on the infection type. If no infection is detected a stay of 48 hours is required to receive standard antibiotics. No temperature must be present for at least 24 hours before the child is sent home.

At such a young age Alice could not be expected to lie still for the multiple scans, procedures and radiation she received during the cancer treatment. Alice had a general anaesthetic each time she had imaging to assess the tumour e.g., Magnetic Resonance Imaging (MRI) and Computerised Tomography (CT), had a clinical procedure such as a biopsy, lumbar puncture to assess the cerebrospinal fluid, Hickman or Peripherally Inserted Central Catheter (PICC) line insertion (devices needed to allow infusion of chemotherapy to larger vessels in the body) and radiation treatment. With every anaesthetic there are certain risks to the child.

Alice had a Hickman line as it is less traumatic to receive treatment and have regular bloods taken through this method rather than inserting a cannula each time. Hickman lines are inserted in to a large blood vessel just above the heart. This enables chemo and antibiotics to be pumped around the body. Alice had two lumens coming out of her chest that were protected in a small bag that she wore. Having a Hickman line meant that Alice was at a greater risk of infections entering the body so they had to be cleaned regularly and you are unable to get the site of the insertions or the lumens wet. Therefore, Alice was unable to go swimming for 20 months or take a proper bath. Alice also got several Hickman line infections which resulted in long stays in hospital to treat them. Community nurses took bloods using the Hickman line twice a week throughout Alice’s treatment to monitor blood counts. This helps to assess whether Alice was well enough for chemotherapy and when to be extra careful going to public places where infections could be caught. 


This procedure involved an 8 hour surgical procedure in which the tumour was removed and rods for brachytherapy were inserted. The next stage involved 3 days of brachytherapy administered every 2 hours for 8 minutes each time. During this time the parent had to leave the room. She then underwent another surgical procedure to remove the brachytherapy rods and reconstruct the area where the first surgery had taken place. Alice was unable to eat and kept sedated for some of this procedure.