Mum Pippa talks about her daughter Amber’s chemotherapy treatment and Rb journey. This blog may be helpful to other parents whose child is, or will be, going through something similar to treat their retinoblastoma.

Amber was diagnosed at 21 months, after a four-week GP referral to the local eye hospital. Once there, they urgently referred her to the Royal London Hospital the following day.

To say it was a whirlwind would be an understatement. The practicalities of knowing where the Royal London Hospital was and how to drive there for 7:30am was challenging (with a toddler who wouldn’t be allowed breakfast – her favourite meal of the day) – and that was before trying to find out where to park.

As someone who needs to be at places on time, sitting in traffic jams to get there ‘late’ wasn’t a great start. However, I have since learnt that we won’t be turned away for being late and this is something to try not to worry about. Once we got Amber’s ‘blue badge’ and spoke to other parents about where was best to park, one of the stresses of getting to appointments has been reduced in a big way.

Within a week we were sitting in a waiting room at Great Ormond Street Hospital (GOSH), talking to the oncologist about the possible side effects of chemotherapy and deciding upon a ‘port’ (or button as we called it) for her chemo to be administered and for blood test or IV antibiotics to go in through. We listened to advice we were given but ultimately it was our decision. As parents we learnt that it was important to remember that although we were not experts in her treatment or condition, we were still experts in Amber and so it was ok to question medical staff and check why and how things were going to happen.

Amber in her hospital bed. Her hair has fallen out.

Amber in her hospital bed.

It took a while to get used to the lump under her skin where her port was located after it was fitted. We were constantly aware, when picking her up, to try not to knock it. As with most of her treatment, I’m sure it bothered us more than it did her.

The first chemo session itself was a huge learning curve: we soon realised that allowing Amber to walk around was not going to be easy with the trolley full of drugs attached to her port, as she was still moving at toddler pace. So we settled for 6-7 hours of time in her cot or high chair watching hospital tv or a dvd on the computer. We always hoped for her to sleep in this time too but it wasn’t the easiest, again with tubes attached and the regular alarms on the chemo machine. The alarms and messages became easier to handle as the sessions went on, and we understood what they meant. However, the added time whenever an alarm sounded – and the wait for a nurse to come to clear the fault – was less easy to manage.

The days were very long, they started with the usual checks of blood pressure, height and weight. We always let Amber choose who gave her a cuddle for these and by the end she would sit on the chair on her own – and usually she still does when we go for appointments. Once these checks were complete, we had to wait for a doctor or nurse to see her before her ‘button’ was accessed and the chemo (stored in mysterious black bags as it must not be exposed to daylight) could start being administered. This could take up to two hours from our arrival.

Whilst in GOSH we found it interesting to talk to other parents, always aware that everyone’s journey is very different but hearing stories that were familiar was strangely reassuring. The offer of making cups of tea or watching each other’s children were always gratefully received.

We found it useful to keep track of Amber’s blood results and also the food she was eating during the first few cycles. It meant when each new cycle started we began to see a pattern of her less hungry days and those when she started eating other foods again. Well-meaning friends and relations would often suggest ‘good’ foods to eat to fight the cancer or to help with her feeling sick. Again we learnt that we were Amber experts and if she didn’t want to eat the ‘right’ foods (or any at all at times) there was no possibility of force feeding happening either!

We were told that calories were all that was important, so if she ate Weetabix and plain pasta throughout treatment I learnt not to worry, especially as she maintained her weight and also put some on. As parents we also found it very useful when friends and family offered to make meals for our freezer, as there were days when we just needed easy food without the hassle of making it.

Unfortunately, Amber was quite sick coming home from each chemo session apart from the last two, when the anti-sickness medicine cocktail seemed to work. We learnt that using disposable mattress liners for her car seat was a good plan and someone sitting next to her with a sick bowl hidden (she didn’t like the sight of them), usually until it was too late! We believe it was travel sickness related to the chemo as it hasn’t happened since.

Amber and dad Glenn at CHECT families’ day out.

During treatment we were given very specific advice about what to do if Amber got a high temperature and when to take her to hospital. The community nursing team soon became our social life and new best friends, and I looked forward to their company as they arrived to do blood tests. We soon got ourselves into a routine for putting on the numbing cream before they arrived and using the iPad for distraction as the port was accessed, although after a few weeks Amber actually wanted to see the needle go in. We know that not all children will be like this, but as we learnt, it was right for Amber. We explained what was happening each time and she began to know the routine. We realised by the end of her treatment, that what at the beginning was a major hurdle, was now a regular event which we took in our stride.

From diagnosis we were worried about her hair falling out and the Rb team told us to take each day at a time and that we would know when we needed to do something. Once it started coming out in handfuls when we brushed it, and it was covering her cot, we realised it needed to be cut so that it didn’t irritate her as much. Ironically, the day she was diagnosed she was supposed have her first hair cut. Instead, she had one at home after her second chemotherapy with two very emotional parents, but as with most things it wasn’t as bad as we thought it may be. Her hair continued to fall out after each cycle until by the end she had lost it all. Looking back, I actually preferred the bald look to the one with straggly hair, but at the time I wouldn’t have changed it. Now as it grows back, it’s great to see, but hard too, as regardless of what she wears people often comment on “our handsome boy”.

Things people said that were hard to hear:

  • “Her hair will grow back”
  • “It will be over in 6 months’ time”
  • “Have a good weekend / bank holiday”
  • “She’s just being a toddler” (when refusing foods/ not sleeping)
  • “My child didn’t have hair until she was two and a half”
  • “If you didn’t know, you wouldn’t know what she is going through”
  • “Your little boy is handsome”

Amber needed platelet and blood transfusions during her treatment. As with everything, the first of each were worrying, however by cycle six we could recognise the benefits they brought. Our local hospital were fantastic, and we had an isolation room at each transfusion. She also had two stays over 48 hours when her temperature spiked. The isolation room was great but you need imagination and great play room staff to keep a toddler entertained in one space for all that time.

A ready-packed hospital bag with clothes for both of us, and toys for Amber was very useful. Duplicate wash bags for home and hospital along with a few cuddly toys made the hospital room seem a little less daunting for us all. A single sheet from home and a pillow case made the nights in the parent hospital bed a little more appealing. Amber’s sleep was disrupted by her treatment. Although friends would say that she was just being a toddler, we also knew she just didn’t feel quite right, and now she is recovered her sleep has returned to a more normal pattern.

Amazingly, we were able to keep on schedule throughout, with final blood tests at times being done the day before as her levels came back up just in time. It was a hard few months which challenged our ideals as parents, as well as the pain of watching our little girl feel more and more tired as the weeks went on. I hear songs from certain children’s programmes now and I am instantly taken back to those days we sat in front of the tv together snuggling, as that is all she wanted to do. Now, she has all her energy back she’s into everything again.

As she gets older the challenge of getting her into her gown and to the anaesthetic room grows but we continue to try to work out how to make it less worrying for her, again with the support of everyone at the hospital. She has worked out the role of most of the people there – who to play with, who will bring her milk when she wakes up, who might take out her cannula and everyone she can ‘chat’ to. We just have to try to remember her sunglasses as having had her eyes dilated she does struggle in sunshine when we leave the hospital.

We have now learnt that although the initial chemo journey is over, the Rb journey is one of twists and turns and ups and downs. Having had nearly a year of regular laser treatment after a relapse 15 months post chemo, Amber is now having intra arterial chemotherapy (IAC). It’s two years since she finished her systemic chemo and her understanding of each process has grown with her.

We’ve collected her Beads of Courage throughout her journey. I particularly have found them good therapy and a visual reminder of just how much our little girl has tackled. Throughout the time we might as well have had the Rb office on rapid redial: their support and reassurance has been invaluable. Each part of the ‘Rb Team’ played a different important role, from the nurses for medical information, managing anxieties and reassurance, the support worker for general all round support, understanding, form filling and a friendly voice to chat to on the low days, and now on the less so low days too! And not forgetting the play therapist at the hospital too.

Amber, mum Pippa and Dad Glenn all wearing CHECT Tshirts. Pippa is riding her bike.

Amber raising money for CHECT alongside mum Pipper and dad Glenn.

We always felt the doctors had time to talk about Amber’s eyes. On days when their lists are long they never give us the feeling that there are other anxious parents waiting to speak to them too. Everyone is willing to listen to and answer questions even when we know we have asked them before, but in the fog of so much information the answers have been lost. They will always be realistic in their replies during the harder days and looking to those when the chemo journey is over.

It took me a while to join the Facebook group of Rb parents and the CHECT page too. I found it too much to deal with other people’s stories whilst I was dealing with my own. However, now, I find it reassuring to read other people’s questions and even feel at times I can give some support through an answer myself. Our first experience of using the group was when Amber was being so sick coming home from chemo. Parents made suggestions and generally made us feel better that it was not just our little girl who suffered in this way.