During spring and beginning of summer 2015 we were in and out of hospitals for chemo treatment and doctor’s visits. Esther was doing remarkably well: even-though she was on a very heavy chemo regimen she was well, not having any problems with eating, being sick or poorly. If it hadn’t been for her pretty bold head and stylish hats you would have never guessed she had cancer. She still hated going at BCH for inpatient treatment, and every time she was admitted we all looked forward to the last drip to be discharged and go back home.

Esther loved being a big sister and in between the hospital stays she enjoyed days out with Mummy, Nonna, baby Alice and sometimes Papa’: we went to the parks, to the zoo, to town, to the woods and even to the seaside. Occasionally Esther went to her nursery for some play time with her little friends.

Two bad episodes happened during that time, episodes that I would happily choose to forget if I were given the chance.

In May 2015 Esther’s CVC line got infected with a nasty bug. On Friday 15th we went to the oncology ward at BCH to start the chemo, and as normal practice the nurses gave Esther some anti-sickness via her CVC line. Esther quickly developed a temperature, started shivering and complained of sharp pain. The doctor on duty ordered blood cultures before the treatment was started and Esther was left under observation. Her temperature was high and she kept shivering so the  nurse who was looking after her that evening called the doctor on duty who came and see us. He recommended to have the CVC line removed the same night and a temporary line inserted to complete the treatment over the following day. He reassured us saying that unfortunately these infections happen sometimes, but it is normally all resolved by simply removing the line with the cause of the infection. It was very hard for my husband Simon and myself seeing Esther suddenly so poorly. I felt guilty to put her through this.

It wasn’t until about 2 am at night that the surgical team at BCH was able to remove Esther’s CVC line. After about a hour Esther came back from surgery: she had a catheter to help releasing her bladder and she was asleep. Shortly after Simon went to the nearby Ronald MacDonald House to catch some sleep with Alice and I stayed with Esther. Luckily everything was much better the following morning (Saturday): Esther’s temperature disappeared, she woke up, ate something and started chatting and being her usual, amazing self and her catheter was removed. She wasn’t happy about the temporary line she had for the drips, as it was sticking out from her neck and was a bit sore, but this was needed to complete the chemo round. Around lunch time her blood cultures came back positive for a nasty bug, but we were told that this could be treated with a course of oral antibiotics that we could give to her at home. We stayed in hospital a couple of days longer, also because we had a MRI scan planned for the following Tuesday, and we were discharged on Wednesday. Esther quickly recovered from this bad episode and was a star at taking her antibiotics at home. She was such a gorgeous, clever girl, so strong and adaptable and her attitude was always amazingly positive. Nothing scared her. She was such an example.

I would like to spend a few words explaining how grateful I am for antibiotics: they are miracle drugs that saved Esther’s life in more than one occasion and should not be overused. Using antibiotics unnecessarily can lead to the development of drug-resistant diseases, that is when an antibiotic no longer has an effect on a certain strain of bacteria. Antibiotic resistance is one of the world’s most pressing health problems. People should take antibiotics responsibly because they save lives and shouldn’t be misused.

After a couple of weeks, in preparation for the next chemo cycle, we had an appointment at surgical day care at BCH to insert a new CVC line. Esther enjoyed her time with no “riggoli”, but wasn’t too bothered by having a new central line put in. It was early June 2015.

The result of the MRI assessment scan showed good but not complete response to chemo treatment. Because there were three different areas on Esther’s arm showing residual disease, the oncology team decided that the best localised treatment for Esther was radical radiotherapy rather than surgery. I was happy that Esther didn’t have to go through surgery although I was worried about the radiotherapy and its side effects. I started researching about proton therapy, as I was aware that this was a novel, more targeted treatment with less side effects. I learned that this type of treatment was not available in the UK: children were sent abroad, mainly to Florida, for their proton therapy sessions. I asked Dr. Dave if this was an option for Esther but he said that she was unlucky to qualify.  Dr. Dave encouraged us to discuss this and any other concern we had with Dr. Dan, our radiotherapy consultant.

Our first meeting with Dr. Dan and his team took place at the oncology day clinic at BCH on the 13th of July 2015. We didn’t take Esther with us, she stayed at home with my mum. At the meeting Dr. Dave, another radiotherapy doctor and the amazing Macmillan specialist nurse Hellen were also present. Dr. Dan seemed very competent and answered all our questions. It was explained to us that Radiotherapy was going to be be given to Esther as outpatient at Queen Elizabeth Hospital in Birmingham daily for 6 consecutive weeks. Esther would have had to be put to sleep during the treatment by a very light dose of anaesthetic. The main expected side effects were temporary sunburn on her arm and tiredness during treatment, and in the long term the arm that was irradiated might have shown delayed growth and lower muscular tone. Proton therapy wasn’t needed because the areas to irradiate were quite large and not anywhere near the head. Proton therapy is used mainly to target small areas near parts of the body that are more at risk of permanent debilitating damage, like brain, eyes, ears etc.

On the 22nd of July we were admitted to BCH for our last chemo treatment, for everyone immense relief (particularly Esther’s!). This was the worst of all the 9 chemo sessions: during the end of the infusion of a drug called Ifosomide Esther had seizures. It was so extremely hard seeing her seizing for over 10 minutes. Nothing was able to stop her. To make things even worst this happened twice. After it happened the first time I was ensured that that it wasn’t going to happen again because there was a drug that was able to prevent such reaction, and it would have been given to Esther prior her final Ifosomide infusion. Shame that this drug didn’t work.

On the positive side I was impressed by how the oncology team responded to Esther’s seizures: in both occasions we were quickly surrounded by nurses and doctors who promptly followed some kind of flow chart procedure they had in place for this type of emergencies. A PICU lead nurse was called, who quickly came down to help out. Luckily she wasn’t needed and Esther eventually stop seizing, quickly going back to her normal self in both occasions, with no idea of what had just happened. It was quite traumatic for me seeing her like that, not being able to help her, not being able to do anything for her. I felt so powerless and guilty. Esther was kept under observation overnight, that meant that every hour or so a nurse came to wake her up to check her vitals and her cerebral responses. Thanks God everything was normal and we were discharged the following day as planned.

On the 27th of July (Simon’s birthday) we had our first appointment at Queen Elizabeth, the “planning appointment”. Esther was put to sleep by an anaesthetist with the “smelly gas” and she was taken for some scans, moulding and tattooing. This was needed to allow the clever radiographers to map the areas that had to be irradiated and to plan the upcoming treatment, preparation that would have taken the team about three weeks.

Esther didn’t like to be put to sleep and was very grumpy when she woke up. I hated to think that she had to go through all that for 6 long weeks. Again, I worried too much for no reason, as my amazing girl quickly became used to this procedure and didn’t seem to be too bothered by it. I will tell you more about the radiotherapy treatment in another post.

On the 11th of August, to celebrate the end of chemo, Esther, Simon, Alice and myself flew to Italy for a well deserved holiday in the sun.