Three years ago around this time Esther was diagnosed with a very rare and aggressive form of paediatric cancer. She was 2 years and 9 months old. Up to then Esther had been happy and healthy: she was developing well and she was seldom poorly.
On the evening of the 4th of December 2014 when I picked her up from nursery, she had a painless lump on her forearm that appeared suddenly on that day. I was concerned so I took her to A&E in Worcester where she was promptly visited and given a X Ray. The response was that it was a bruise which would have been completely reabsorbed within 6 weeks. Esther was a little tired but well, she didn’t complain about the visit and she just went along with the radiography.
After about a week I noticed that the lump wasn’t disappearing, on the contrary it was getting harder so on a Saturday morning my husband Simon and myself took Esther back to A&E. She was visited by the resident GP and we were told that she didn’t require urgent care, so the best thing to do was to wait a little longer and if the lump still persisted to take her to our GP… if only they knew!
The following Monday I rang our GP and on Tuesday we were seen by Dr. Claire, who immediately was very concerned and recommended having an urgent ultrasound. At that point I obviously started to be quite alarmed, but I was determined not to make Esther worry keeping things normal for her.
Dr. Claire rang us the same evening suggesting that Esther was admitted as an impatient at the local hospital, so she could have the scan sooner. For the first time Esther, my husband and myself made our way to the children’s ward and Worcester Royal Hospital, called Riverbank ward, which would become a very familiar place for us in the years to come. It was the 16th December 2014. After a few visits, tests and discussions with doctors and nurses at WRH it was decided to have a MRI scan done ASAP.
By then I was extremely worried and I had already started reading on the internet about possible causes of painless lumps in children. The word “cancer” already crossed my mind but I was positive and I would have never thought that my beautiful and healthy little girl had a life threatening illness. As for Esther, she liked all the attention she was getting by the nurses and she absolutely loved the playroom at Riverbank… so much so that she kept asking if she could go back there and play when she was at home!
A couple of days later, on the 18th December 2014, we went back to Riverbank for the MRI scan. Esther was put to sleep with some sedative and brought back to the ward after the scan. Soon after her MRI, while she was still sleeping, she was taken for a chest X Ray as well. She was still sleeping at the ward when the doctors came into the room and gave us the terrible news that Esther had cancer. We were dismissed and we were told that we would have been transferred to the care of Birmingham Children’s Hospital. My heart was shattered and I was so scared for the journey ahead.
The following day we were contacted by our first POON (Pediatric Oncology Outreach Nurse), Susan, who arranged a visit with our oncologist, Dr. Dave.
Our first appointment with Dr. Dave was on Monday 22nd December. My first impression of the oncology clinic at BCH was not very good as the waiting room was overflowing with young patients and their families. We later learned that that morning was exceptionally busy because they were trying to fit everybody in with their visits and outpatient treatments before Christmas. We didn’t have to wait long and we were soon met by Susan and taken to an office to meet Dr. Dave. He first asked a little about Simon and myself, what we understood was happening to Esther; he saw my bump and asked about the baby and when she was due… then he spoke a little about himself and about the next steps: he needed to find out more about staging and type of cancer, so Esther was booked in for further tests that were going to happen that same week. On my night wondering on the web I found that Esther might have a type of cancer called “sarcoma”. I asked the question to Dr. Dave and he answered that yes, it was likely that Esther had a form of sarcoma but that more tests were needed.
My first impression of Dr. Dave was positive, he seemed very knowledgeable and approachable and tried to engage with Esther in a nice way. Esther was all over the place: she was certainly not shy and she was amused by all the attention she was getting… showing off in her lovely, naive way. I was extremely concerned and dreading the tests and the treatment ahead: I was afraid it would hurt and change my beautiful and amazing little girl.
We were supposed to fly to visit my family in Italy for Christmas, but we cancelled and decided to spend the Holiday with Simon’s family in Cardiff instead. I informed my parents who decided to come and stay with us after Christmas to help us and support us.
On Christmas Eve Esther had further scans at BCH and in the evening we drove to Cardiff. Our first experience at BCH was not good: in order for her to stay still during her scan, Esther had her MRI at WRH under sedative. The intention was do sedate her at BCH as well, but the problem was that at WRH the sedative was given by suppository, which was very quick and simple and Esther didn’t even realise she was getting it, while at BCH the protocol for sedation was by mouth only. Obviously Esther didn’t want to take her sedative: we tried to force her to swallow it but she was quite a stubborn little girl… Likely Susan came to our rescue and we were transferred to surgical day care. While we were waiting at surgical day care Esther met Mickey Mouse, Olaf, Elsa and some other Disney characters who were visiting the children hospital at Christmas Eve. Esther found them rather amusing and their visit definitely lifted her spirit! When our turn came Esther was put to sleep with anaesthetic gas and promptly taken for her pictures. She was also given some radioactive dye and, as I was pregnant, I was advised not to stay to close to her for the next 12 hours… which was so hard!
Thankfully we spent a lovely Christmas Eve with my brother-in-law family in Cardiff: Esther was very happy to be with her cousins and the night passed quickly and I could soon hug her again! Christmas day 2014 was very difficult for both myself and my husband, but Esther had loads of fun with the extended family, especially playing with her favourite cousin Tabitha.
We spent a couple of days in Cardiff before driving back to BCH for more test: a biopsy, a bone marrow aspiration and the insertion of a CVC (the “Wiggly”) for chemo and blood tests. This time everything went smoothly: we were sent directly to surgical day care where a lovely nurse took care of us. Esther was prepped for her surgery together with her faithful teddy squirrel, “Birchwood”, which was kindly donated to her by Sharon from nursery. Like Esther, Birchwood had a poorly arm and they both needed to be taken care of at BCH. The procedures went smoothly and lasted about a hour. Soon after Esther woke up and was ready to go home. We were give pain killers to take home but she was absolutely fine and didn’t need any. The surgical staff was amazing and they put some plasters and dressings also on Birchwood while in theatre.
On the 29th of December we were called to meet Dr. Dave again and he gave us the dreaded diagnosis: the results of the bone marrow aspiration were still missing, but it was clear that Esther had a rare form of childhood sarcoma called “Rhabdomyosarcoma” of the most aggressive “Alveolar” sub-type. It seemed to be localised in her arm but the regional lymph nodes were already involved. Dr Dave told us that the sub-type Esther had was difficult to treat but that Esther had a chance. Treatment would have started the following week and involved chemotherapy with a standard protocol adopted worldwide for that type of tumour, followed by more scans and possibly surgery and radiotherapy. Dr. Dave gave us a lot of details about the chemotherapy and its side effects. When pushed to gave us a prognosis he said “less than 40% survival”, which was so hard to hear for me and Simon. Devastatingly later we learned that, although not extensively, the cancer was already metastasised in Esther’s little body, with involvement of the bone marrow and of a small area on her spine, which made our poor prognosis even grimmer. We stayed strong and we were determined to beat the monster. When I was given the diagnosis I was heartbroken but not surprised: my internet research had come to the same conclusion on the type, so in a way it was just an unwelcome confirmation.
Esther was not in any pain or discomfort whatsoever, but I believe she understood that something was going on; however she was too young to make much out of it and she was always her happy and confident self. The only thing she really hated during this time was being “poked” for blood tests, which happened twice.
December 2014 was one of the hardest periods of my life. The medical staff at both WRH and BCH were amazing at delivering a full diagnosis in less than 2 weeks over Christmas. Everyone worked hard to make sure that no time was wasted as childhood cancer is so aggressive that every minute counts. Sadly this didn’t save my precious girl, but I blame for the failure of her treatment the dated and useless protocol she was put on.
I would like to conclude this lengthy post with some practical advices for fellow oncology families:
1. One thing I found is that we were overloaded with information: obviously if your precious child is diagnosed with a life threatening disease you want to know as much as possible to be able to help them. However I found some of the things I was explained were not useful in that particular moment: I didn’t need to know about late side effects, about special feeds, about how to clamp a broken CVC… it was too much all together, when I was still struggling to come to term with the dreadful diagnosis. So my advice is do not hesitate to ask medical staff to stop and give you time to process the information: they are there for you.
2. Internet search is discouraged by the medical staff: we were given leaflets and addressed to couple of websites only. I believe it is a personal choice: I couldn’t avoid searching the web and it did help me to have a general idea about what to expect.
3. Esther went through a rather frantic couple of weeks when she was diagnosed. It helped her sharing every moment with her teddy squirrel Birchwood, who underwent the exact same procedures and tests as her. If your child is very young, get them a special friend in the same situation to share their journey with.
4. Family is everything. Our extended family helped us so much to put things into perspective and entertained and supported Esther when my husband and myself were struggling to cope with the Earthquake that had just hit us.
5. The Big C journey is not only emotionally but also financially stressful for the whole family. Invest in a critical illness insurance. This is actually an advice for everyone as I realise that if your child has already been diagnosed you won’t be eligible. My husband and myself both took a critical illness insurance when we bought our first house that same year. It was very easy to get the premium following Esther’s diagnosis, which meant we didn’t have to worry too much about our finances and could make the big C journey as pleasant as possible for our amazing girl.
6. Do not worry too much about the journey ahead: take each day as it comes. Each child responds differently to the treatment: some sail through it, while for others it’s much harder. You cannot foresee what it’s going to be like so stop worrying. I spent too long being afraid that chemo and hospital stays would have transformed my beautiful and confident little girl; on the contrary she was amazing through it all remaining always her amazing self…. But I will talk about this in another post.