Maya was diagnosed with embryonal rhabdomyosarcoma on 30th January 2023, aged 5. The tumour was located in the chest wall lining of her right lung. Maya is currently undergoing chemotherapy and will be starting proton therapy at the Christie, Manchester. Her care is led from Birmingham Children’s Hospital. She is on the FaR-RMS trial.
Maya started off complaining of tummy ache for about a week, she was still attending school and all her after school clubs. We decided to take Maya to the Doctor and they did a full examination and put it down to a pulled muscle as a result of all the gymnastics she does. Maya also had tonsillitis during this period but a few days later she developed a chesty cough so we went back to the Doctor’s surgery. Upon listening to Maya’s chest and concern around there being no airway on her right side, Maya was referred to Worcestershire Royal Hospital for an X-ray. This confirmed that one side was completely covered with fluid. They started Maya on antibiotics and were then transferred to Birmingham Children’s Hospital for further tests.
A CT scan sadly revealed a large mass within the chest wall lining of the right lung and we were told the nightmare news that Maya had cancer. Birmingham Children’s Hospital acted really fast and Maya had a biopsy, bone marrow aspirate and insertion of a chest drain and central line. Following this, we heard the word ‘rhabdomyosarcoma’ for the first time.The first difficult decision we faced was deciding to have one of Maya’s ovaries frozen for the future due to the impact that treatment could have on conceiving children naturally. We never thought we would have to think and make decisions like this.
So far, this journey is utterly heartbreaking to say the least. It’s a living nightmare that I want us all to wake up from. It is so complex explaining to a five year old that she will lose her hair and trying to talk about it in a way that will not worry or frighten her too much. Also, helping Maya’s big brother, Theo understand what is happening to his sister feels impossible. Maya’s diagnosis has transformed our family life.
However, Maya has been such a warrior throughout the chemotherapy that she has endured. She is now entering cycle seven of nine. The chemotherapy involves two nights of IVs in the first week and a second week of outpatient chemotherapy for five days. Fortunately, she was also accepted on to the FaR-RMS trial and will shortly start proton therapy at the Christie, Manchester for six weeks. Maya has amazed us every single day, she has completed a 5k cancer research race and also competed in her first ever gymnastic competition during this time. Maya’s energy and bravery throughout all of this brings me to tears writing this. You truly are the biggest inspiration, Maya. We will never ever take a ‘ normal day ‘ for granted ever again! You really do not know what is around the corner, we are now the family asking for everyone’s help.
We want to help find better treatments for rhabdomyosarcoma and better treatments available at the point of relapse. This can only be achieved by increased funding into rhabdomyosarcoma and raising awareness of the disease. This is our motivation for creating Maya’s Arc and contributing to future change.
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A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
Alice’s Arc: Registered in England & Wales
Charity Number : 1164253
Alice’s Arc, US Inc: A registered 501(c)(3) public charity under the US Internal Revenue Code EIN: 88-4312752
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