As I have already explained in my previous post, when Esther was diagnosed with cancer and her treatment plan was put in place by her consultant, I was very much afraid of its effect on my beautiful daughter: I was scared that it would have changed her and hurt her. I guess this is a normal fear for any mother who goes through this same journey: we dread the days ahead because we have little or no control of what it is going to happen – we have to learn to live one day at the time, taking each day as it comes. The journey with my Esther thought me exactly this: that control is an illusion and all we can do is riding the roller-coaster, enjoying the beautiful days and and waiting for the bad days to pass…
We started treatment in January 2015, when Esther was just under 3 years old. It consisted in 9 cycles of intensive chemotherapy given as impatient over 3 days every 3 weeks, according to the IVADo protocol, that is a standard protocol used in Europe and Australia for the type of cancer Esther had. After about 4 cycles detailed body scans would assess if the treatment was working and what type of localised treatment would give Esther the best chance of survival: radiotherapy, surgery or a combination of both.
Intensive chemotherapy means short term side effects like loss of hair, nausea, headaches, weight loss, mouth sores and neutrophenia, which is a temporary condition that reduces the body’s ability to fight off bacterial infections. Esther was a star and adapted fairly quickly to her treatment: apart for the first cycle she didn’t suffer of any episodes of nausea and she was almost not sick at all; towards the beginning of her treatment she lost her appetite and she had a few mouth sores, but she soon got her appetite back and put the pounds she lost back on, without the need of any special feeds.
Esther had always a positive attitude towards everything, she never moaned about things, she was brave and she enjoyed having people around her all the time. However Esther didn’t like having to stay at the hospital: she particularly disliked being hooked up to machines for chemo, fluids or antibiotic drips, which restricted her movements and her ability to run around as she would have liked. We spent our time colouring, painting, sticking things down with glue, making art and crafts, playing with figures, and of course playing games and films on the iPad…. We must have watched Frozen at least a dozen times during those hospital stays!
The first 4 cycles were harder on her little body than the remaining 5, because of an additional drug called “Doxorubicine” that is not very kind, especially when combined with the other three drugs included in Esther’s protocol.
During the first 3 months of her treatment Esther occasionally developed febrile neutrophenia – that is low neutrophils counts in the blood combined with a body temperature of 38C or above. This condition required additional hospital admissions during the “recovery” days in between chemo cycles. This was the worst side effect for all of us because we all hated to stay at the hospital waiting to be discharged… what was frustrating was that Esther was fine with herself, she was playful, happy and she didn’t have any temperature at all for most of the day. However because of the risk of developing septicaemia, even one single temperature spike over 24 hours was a cause of concern, so she had to stay in hospital under observation until the temperature spikes cleared completely for at least 48 hours. After the second round of chemo at Birmingham Children Hospital we had to stay at the children ward in the local hospital for 8 consecutive days because of febrile neutrophenia, which was the longest we ever stayed in hospital!
Another thing Esther hated during the first few months of treatment, besides staying at the hospital, was changing the dressing over her Central Venous Catheter or central line, which is a long thin tube inserted in a large vein near the heart used to give medicines, chemo drugs, fluids or blood products… This procedure was done at home by the community nurses once a week and consisted in using some special wipes to remove a big sticky plaster which kept the line in place and putting a clean new plaster back to secure the line. It was not a painful procedure at all, but I guess Esther didn’t like the nurses doing it because it was a personal spot that she didn’t want people to mess around with. Her attitude changed after a couple of months, when she understood that there was nothing to worry about, and she became a star with that procedure as well.
Esther had a few problems with her CVC, which was unfortunate, and she had to have her line replaced twice: the first time the CVC didn’t work properly, the second time it developed a nasty bug that caused Esther to have high temperature and shivers during one of the admissions at BCH for chemo treatment, so it had to be removed urgently. Luckily it was all resolved rather quickly with a new line and a course of antibiotics.
On the 9th of March Esther’s little sister, Alice, was born (I will write a separate post about Alice’s birth story). Since then everything went more smoothly with the treatment: no more hospital stays in between chemo cycles, no more mouth sores and generally a better Esther with a healthier appetite. She quickly gained weight and the risk of having to use a G-Tube for special feeds- which I strongly wanted to avoid, disappeared. Esther was able to start doing again all the things she loved: going to nursery to play with her friend, going to the park or for days out with Mummy, Nonna and little sister, playing at home with all her toys and her precious baby dolls. She started also going to a dancing group at the local parish hall, called Jitterbugs, which she absolutely loved.
We had our first set of treatment scans in April, and with our immense relief they showed the tumour in the spine had disappeared and the ones in the primary site were massively reduced – which we had noticed already. Dr. Dave, Esther’s consultant, was pleased but warned us that this didn’t mean much and the journey ahead to full remission was still long and very much uncertain. Treatment continued and a second set of scans later on allowed the oncology team to decide on the next steps, but I will talk about this another time.
As I said at the beginning of this post I was going along on the roller coaster, just trying to support Esther the best I could. My husband and myself didn’t like the hospital stays at all, we found them extremely boring and didn’t like to see Esther being hooked up to pumps, although this was in an the attempt to cure her. Esther’s courage and positive attitude helped us enormously and we always tried to stick together during those days: we were team Esther, always together supporting each other – which was our strength. I tried also to make Esther feel as she was no different from her little friends: I didn’t want her to think that she was an heroine on a mission to defeat a terrible monster, that simply didn’t feel right to me.. so we faced the treatment as it was something that her and some other children had to do, but that it was not a big deal.
I was aware of the poor prognosis but I was staying positive and trying to persuade myself that the treatment would have worked and all this would have been behind us soon.
Esther was a very special Angel who loved life, she went through the most aggressive treatment seldom complaining and never losing her beautiful smile. She was always content and enthusiast about everything. Esther guided me through it all and thought me so much… I feel very privileged to have been able to share this journey with her.