Our Story

 

On the 9th June 2017 our 7 months old daughter Lila was diagnosed with ALK+ anaplastic large cell lymphoma (ALCL). ALCL is a rare disease in babies. So rare that only 5 cases were reported in Europe in the past 10 years. As a parent, nothing quite prepares you for this. These are things that happen to other people, that you read about in the news. Certainly not something that you'd expect to happen to you. I had spent the previous 8 months on maternity leave, talking about nappies, breastfeeding, complaining about the lack of sleep and attending a myriad of baby sensory classes and mum groups. I love my daughter to pieces and yet maternity leave was hard, at times boring and I was getting mentally prepared to go back to work. Now I interact in a number of cancer support groups for parents and I cannot go to cafes, shops or toddler groups with my daughter. How on earth did this happen?!

Lila started having unexplained fever at the beginning of May. Initially she had random episodes which I put down to teething (although technically teething shouldn't give temperature). From the 20th May her fever became more regular, every day she would peak to 39 degrees and only paracetamol or ibuprofen would help bring it down. I took her to the GP several times. The doctors thought it was viral. She looked well in herself, no other symptoms than fever. She was still a very smiley baby and nothing indicated that it could be something more. One GP even said: "whatever virus she had, the worse is probably over". I wish I could go back to that GP right now... The third GP I consulted thought it could be a UTI so gave her antibiotics whilst we waited for the urine tests to come back. UTIs are the type of things they first try to rule out when there is a case of unexplained fever. As the antibiotics were not helping control the fever I eventually decided to take her to A&E. She was admitted and put under observation. In A&E they also thought it was viral or bacterial so carried out blood, urine and spinal fluid cultures and PCR to determine which virus or bacteria was affecting her. Lila was still well in herself, just progressively getting a bit frustrated and grumpy. She was given broad spectrum antibiotics to cure whatever bacteria she might have had. By the third day it was clear that antibiotics were not helping and her health was deteriorating, yet they kept her on antibiotics which caused constant diarrhoea and, later on, the most horrendous nappy rash. In the meanwhile, one of the lymph nodes in her groin became swollen and her abdomen became distended. Her spleen and liver were unusually large.

Teams of doctors started coming into our room explaining the list of diseases they thought she might have. They first considered and very quickly ruled out Kawasaki disease, then there was HLH, then a Mediterranean diseased caused by a sandfly bite called Leishmaniasis (we had recently visited Italy where the disease is endemic). Lila was enrolled in several rare disease research projects. Nurses were constantly taking observations every half an hour and taking bloods from her. Lila has always been a chubby baby so her veins were not easy to find. They pricked her hundreds of times. Her arms and legs were covered in bruises. One night, at 2am, I told off and stopped a doctor who wanted to take blood from her face. I simply could not bare to see my daughter tortured any further. She developed fear of anyone who would come close. For a week she was not able to sleep more than 10mins. She became extremely irritable as she was in pain and sleep deprived. Doctors were concerned about her irritability as it could be a sign of something in her brain and I kept telling them that she should be allowed to sleep, that she would eventually calm down. Doctors, however, decided to do an MRI of her head to discard brain disorders. Lila also underwent a lymph node biopsy and a bone marrow aspiration. Over a two week period we saw haematologists, oncologists, infectious diseases specialists, metabolic diseases specialists and rheumatologists. None of them had a clue what was going on with her.

One morning, Lila deteriorated significantly. I entered the hospital room and she could not breath properly, she couldn't even open her eyes. She was extremely swollen, like a balloon that had been injected with too much air. We immediately called the nurse. Doctors were now alarmed. She had gained 1kg overnight (quite a lot for a small baby), she was anaemic, all her blood counts were wrong. White cells and C-reactive protein (a marker of inflammation) were high, red cells and platelets were low. Lila needed a blood and platelet transfusion. They put her on a diuretic to help her lose the excess fluid she was accumulating. We were also moved to the High Dependency Unit for closer monitoring. In the meantime, we still did not know what she had. We lost track of all the tests being done. To make our wait even more agonising, most labs don't work over the weekends. They decided to provide supportive care and treat her for Leishmaniasis, as she displayed several of the symptoms. Nothing seemed to improve. On the 8th of June, doctors came to tell us they believed Lila had cancer (but they were unsure which specific type). They had seen abnormal cells in her bone marrow and lymph node but had to wait for further genetic tests to confirm the diagnosis. The disease was still unclear as the pattern of cells was very unusual. A few days later the test revealed she had ALK positive ALCL (anaplastic large cell lymphoma) - an extremely rare cancer in babies. On that day we moved from the HDU ward to the oncology ward of the hospital. We moved at night, in silence. I looked at the room that would become our homes and fear creeped in. We were on a long haul flight to nowhere. On the 10th June, our little baby Lila started her first round of chemotherapy. As shocking as the diagnosis was, we found relief in knowing that at last she could start treatment. 

©LGH2017

©LGH2017