Bláthnaid Foley Trust - Caring for a child with Ewing's Sarcoma and Bone Cancer

How to Care for your Child

The information listed in the sections below should not to be considered as medical advice. It is intended for information only, based entirely on my own experience. If you have specific concerns or queries please seek the advice of a suitably qualified medical practitioner.

Dealing with diagnosis
Food/Nutrition
Relaxation
Friends
Yourself
Diet - Article by Ruth Kilcawley

Overall Approach - dealing with diagnosis

When Bláthnaid was diagnosed with cancer, our initial response was one of shock and a sort of suspended panic ridden state that was very hard to shake off. I realised that the type of cancer my child had was particularly aggressive. My initial fear was that there was no treatment available. When I was advised that she would be given chemotherapy as soon as possible part of me was relieved. I thought ‘this is a start, a beginning’ and it was a beginning of sorts. I needed to grasp something positive and I thought of the children, and there are some, who were worse off than mine. I knew that my precious child, in spite of how ill she was, looked to me for comfort and support and strength. I had spent time in hospital as a small child myself and the memory of the loving care given to me by my own Mum gave me the standard to try to match.

In the days and nights following her diagnosis, Bláthnaid and I had many long conversations about what was happening and how we could manage together. I said ‘It’s not fair, you shouldn’t have this, but sadly fairness doesn’t come into it. This is our lot and we have to cope with it and we will’. I said ‘life is now Bláthnaid, nobody lives in tomorrow and we can’t go back to yesterday‘. ‘Life is now and life is good’ was another one of my mantras. Looking back it was as much about me coping as Bláthnaid but I truly believed it helped her. We decided at the beginning that these rogue cancer cells were the enemy and I encouraged Bláthnaid to close her eyes and visualise them. We even drew our own interpretations of what the tumor on her primary site looked like. I said to her that she was the lone soldier facing this enemy but we, her troops, could help her fight by giving her the weapons she needed to attack. I said that the chemo. was a very good weapon and she described seeing it as throwing acid on it the tumor and watching it smoke and shrivel. I had this question I used to ask her ’What does the cancer want?’ and the answer was ‘To take the goodness out of me’. That’s how I tried to encourage her not to let it get her down emotionally as well as physically. I used to say to her that by just enjoying part of her day it was winning a battle and the delight in her beautiful face when she’d realise that was enough to keep me going until the next day.It would be wrong to say that we had no good times in those months. Every day Bláthnaid was alive was a good day, but she suffered terribly at times. At the start we decided to have three goals a day, one was always achievable even if it was just to not get sick for one hour of the day, the second goal would be something a little bit bigger and the third goal would be the real bonus, like not getting sick at all. For Bláthnaid it gave her a sense of control and something to work towards at times when everything would at first appear to be beyond her control. This approach made a monumental difference to us, to how she tolerated her treatment and to her quality of life. It was always heartbreaking and humbling to watch her struggle with terrible sickness and sadness but the rewards for her perseverance made it worth all the effort.

Food/Nutrition

This is a vast area to cover but there are a few basic things that we learnt along the way that might help others.

First of all, when my child was diagnosed I read so much material about the food that we eat and how it affects us. As bowel cancer has claimed seven of the eight of my father’s siblings, I have grown up with an awareness of the importance of a healthy diet combined with exercise. I even brought Bláthnaid and her older sister Sorcha, to the Hospice to see a close family relative shortly before she died of Cancer in May 2001 to try and show the long term effects of recognised unhealthy habits like smoking could have on the body. I was always aware of the healthy home cooked food my Mum had provided for us at mealtimes. In summary, I believe I made a real effort with my own children’s diet and lifestyle, but cancer still struck my child.

I gradually became aware that childhood cancers are probably not related to diet like some adult cancers, since a child is too young to have built up the toxins or exposure that an adult can experience after years of poor dietary habits. Early on, a casual remark by one of the staff in the hospital that ‘malnutrition is probably responsible for more deaths than chemo toxicity’ struck home and I decided that I’d introduce a healthy diet as and when I could get my girl to re-gain the half her body weight that she had lost. She, like many others, took an instant dislike to all the supplements supplied by the hospital and as soon as I could I convinced her to have a naso-gastric tube inserted to enable us to feed her even when she had no appetite. That was a turning point. Once we had arrested the weight loss and she started to re-gain weight her appetite came creeping back. As difficult as she found the unwanted attention resulting from the NG tube (she always said it was worse than the bandana for stares) even she was on board with the regime and felt the benefits very quickly. Chemotherapy affects appetite and taste every bit as much as it causes nausea. It reminded me of pregnancy the way she would crave foods out of the blue and I remember one particular occasion when I arrived home from the Chinese takeaway laden with food to find her sitting down watching the television with a knife in one hand and a fork in the other and a napkin tucked in under her chin ready and waiting for her beloved crispy wanton! We used to joke about all the sugar laden breakfast cereals that were permitted into our house because any food that we could get into Bláthnaid was welcome.

Foods with high protein content are most helpful as protein helps to replace lost muscle. We also used little tricks like the ‘yoghurts’ that have chocolate pieces in, fizzy drinks and milk shakes that would help her take on more calories without having to work too hard. Ice pops, crisps, crackers with cheese anything that would help. The reality was that, with the marked exception of a period on high doses of steroid, eating was hard work and Bláthnaid had to work hard just to eat as many calories as she was burning in a day. Chemo. can accelerate the metabolism and it’s another struggle for kids to face, trying to maintain their weight, let alone re-gain any so it’s vital to keep on encouraging them even though it’s often not welcome.

Relaxation

This was a vital part of Bláthnaid’s well-being during her illness. When she was first diagnosed, while she was dealing with huge burdens of stress as well as sickness, I asked her where her favourite place in the whole wide world was. It was down by the stream near my parents’ house, a favourite place of mine and my sisters when we were children too. It’s one of those precious places that calls to mind summer time and the smell of freshly cut grass and the sound of the water gurgling over the stones while the birds out-do each other with song. She used to close her eyes and I would talk to her about it asking her to imagine herself at the waters edge playing with her brother and sisters and knowing that Granny was cooking one of their favorite dinners. She would imagine the blue sky with one or two fluffy clouds suspended high above and the smell of the horses that Granddad would take them to feed in the next field. Again, you could actually see her relax and so many times it enabled her to fight back the waves of nausea and panic and she would drift off to sleep. When she was very distressed with nausea we would imagine that she was wading in the waters of Rosses Point, a beautiful beach here in Sligo. We would say that the water was getting choppy and she was up to her waist and needed to turn around and come back to shore. She would imagine the cold water on her legs and the warm sun on the back of her neck. Imagine the sounds of the seaside, the childrens cries and the call of a seagull. I said to look at the shoreline and there I was watching her all the time - aware that she’d been getting out of her depth and ready to come and get her. Then I’d say ‘You’re doing it keep coming, keep struggling against the pull of the sea’. Nearly every time it worked and she would relax enough to fight the sickness.

As we had so much success so early on with visualisation I decided to expand to other methods of relaxation and we explored all that we could. We discovered the music that helped her relax the most and we had great fun buying different oils and candles to burn and again, these really helped. We made a pact to try and do something with every day to try and enjoy living as much as we could. Simple things, as always, were the best - feeding the Swans at beautiful Half Moon Bay on Sligo’s Lough Gil or even just watching the tide turn at Strandhill as the sun went down over Sligo Bay. These things made a huge impact on her well-being and, I’m convinced, helped her enormously cope with her medication and the disease itself. Again, she was involved and had choices in what she listened to or what oil went in the burner, it gave her control over some things when there was so little to be had elsewhere.

Friends

When you’re child is diagnosed with cancer and treated with chemotherapy one of the most frightening side effects is the episodes of being ‘neutropenic’. This means that the white cells or ‘neutrofils’ that can protect us from infection are below a critical level and that your child is at increased risk of infection as they have little or no immune response. An infection that you or I wouldn’t even notice can be life threatening to them. Your instinct as a parent is to wrap them up in a sterile roll of cotton wool and keep them ‘safe’, isolated almost, until their immune system recovers from that particular bout of chemo. There is a sign outside that parents kitchen on St John’s Ward in Crumlin, (or was, when Bláthnaid and I were there) that says that children are encouraged to attend school even when they’re neutropenic. I remember reading this sign when Bláthnaid was reeling from her first course of chemo and thinking ’yeah..right!’. I hadn’t bargained on Bláthnaid reading the damn thing though had I? As she re-gained strength and weight from the end of June 2005 she became determined to make the move to return to school. That sign! She quoted those words to me more than once and I remember realising that it was her body, her life and her choice (to a certain extent). I reluctantly agreed (secretly hoping she’d change her mind) and all I can say is that she was not admitted for one infection during this time and it proved to be absolutely the right decision. The benefits from being at school with kids her own age were huge. We were fortunate enough to live close enough to our local hospital, Sligo General, to be able to avail of the enormous support of the Laboratory Staff and facilities there. We would take Bláthnaid’s bloods and John would drop them up to the Lab after leaving Bláthnaid and Sorcha to school. Within an hour or so I would have the results and be able to text them to Bláthnaid. She would then know the precautions to take, for example if her platelets were low to look for bruising or if her neutrofils were low to check her temperature. It worked and I realize how lucky we were that she was old enough to be responsible for her well-being but on reflection I feel that it the fun and friendship that she had as a result of being in school, for her, outweighed the risks.

Another difficult aspect of Bláthnaid’s illness was the reaction amongst her peers. Initally she was so terribly sick that she was preoccupied and didn’t notice the absence of her friends. Those she had grown up with and knew her best retreated, not knowing what to do, and she was heartbroken to feel they were all moving on without her. The irony was that she was such a caring person that she would never have behaved in the same way herself. We were very fortunate in that we have three other children so at least she had their company and her bonds with them were strengthened even further. It’s a tragic story that, having spoken to many other parents, seems commonplace with other kids with cancer. So many of them were ’dropped’ by their best friends and left facing that isolation to cope with as well as a life threatening illness. I think that there should have been some support to educate others about the illness and raise awareness so that a child wearing a bandana is not burdened with the feeling of being an outcast just when they need company the most. As time passed, Bláthnaid had two friends who filled the gap left by others. They gave her the chance to have a ’normal’ existence and she was welcomed and loved by their families. Many of the happiest times she had in her last months were had with these lovely girls and we will forever be grateful for their friendship.

In spite of her illness she was determined to start secondary school in September 2005 and she did. She was buoyed up by her special two friends, and was able to re-connect with others in her year. Tragically she was the target for episodes of bullying and with the support of the school, even overcame these. As her Mum there were times when I was torn watching her struggle with huge burdens and I felt I was able to do so little for her.

If there is anyone reading this who knows someone with cancer, especially a young person, I would ask you to support them, let them know you’re there and keep letting them know. Remember, you have no idea how difficult it is for them, sometimes they will not be able to face people so write, e-mail, text just be there.

If your child knows one with cancer, be grateful for your child’s health and again, learn about the illness and explain to your child. Educate them and encourage them to continue to play with and interact with the sick child. Remember that cancer is not contagious. Current statistics indicate that as many as one in three of us is likely to develop it at some stage in out lives. We need to change our attitude to cancer, I used to say to my child not to give it the power to scare her and drag her down. I used to say she was Bláthnaid Foley with cancer, not the other way around. I wouldn’t even give it a capital ‘c’ as in the big ‘c’ referred to by older generations. It doesn’t deserve it.

Yourself

When I was writing this piece about caring for your child I knew I had to give some space to the parents and carers. You need to allow yourself some time away from your child, even if it was like us, to go for a meal occasionally, as you need to keep well in order to care for your child. Try and get some family time, even a trip to the Zoo provided us with great happy memories of us all together.

Unfortunately, my Mum was ill when Bláthnaid was diagnosed and she deteriorated over the following weeks and died on the 16th of June 2005. I was devastated as my Mum was one of the few people in my life who cared about me so much and would have been a great source of strength to me had she lived. I don’t know how I overcame her death, I suppose I never did, but I knew that I had to cope for my children’s sake. You need to lean on those that give you support and I would suggest contacting a group of parents, like you, who have children with the same condition. It’s amongst these people that I find the greatest sense of ease. They understand.

Finally, I would say allow yourself to HOPE. A few weeks after Bláthnaid died I found a little note left by her that simply said ‘Hope has wings’ and that says it all. I began by hoping that her treatment would be successful, then I hoped for a miracle. In the final weeks and days I hoped that her palliative care would extend her life and that she would not have pain. Now I hope that I will be re-united with her one day. Hope has wings!

Caring for Blathnaid – Dietary Approach

By Ruth Kilcawley

Like so many health professions being a dietitian is tremendously rewarding work, being able to really help somebody who needs it is always good, but its those special and difficult times when you use your skills for someone you love that will always stay with you.

Helping Blathnaid was one of the most difficult, heartbreaking and immensely rewarding experiences of my life.

Nutritional Assessment: The first effect cancer often has on the body is very rapid weight loss, this is due to the effect it has on the metabolism. Essentially the body is burning more calories than normal, and in order to fuel this it breaks down its own fat stores and also lean body mass such as muscle. Before Blathnaids diagnosis I was concerned enough to plot her weight on centile charts and was stunned to discover that she had dropped from the 50 th to the 2 nd centile in a matter of weeks. Her appetite was poor due to the pain she was experiencing but this reduced intake could not explain such rapid weight loss and that there was underlying cause was an unavoidable reality. Keeping dated records of weight and height for a child is important in tracking the development of disease related malnutrition.

High Protein High Calorie diet: The first dietary strategy for Blathnaid was to make every mouthful of food she ate as nutritious as possible. By eating more calories, particularly more protein, the body would not deplete its own stores so rapidly and therefore the weight loss and subsequent malnutrition would be slowed and perhaps stop.

We focused on concentrated forms of energy which were also high in protein. From the start she did not like the oral nutritional supplements however after we chatted about exactly why they were so beneficial, she made a great effort throughout her illness to take them anyway, particularly when her intake was very poor. When she was not taking supplements a multivitamin was important as fruit and vegetable intake was not as important at that time as protein and total calorie intake. Dairy foods such as yoghurt, skimmed milk powder, cheese, milkshakes became a cornerstone of her diet.

What is important here is compromise, yes certain foods were better than others but something eaten is more nutritious than something else left on the plate. I went to the supermarket one day on my way to Blathnaid’s house and got lots of high protein high calorie foods, some snacks and some desserts. I taught Blathnaid how to read labels and how to make informed decisions about what she would eat. I described the role of calories and protein in her illness and together we thought of different situations such as break time in school when she could maximise her intake without feeling different from her friends. We joked that they would all be jealous of the ‘anti-diet’ she was on. Hot chocolate with marshmallows, lattes, noodles, muffins, some specific chocolate bars all featured in this strategy.

Diet and Treatment: Keeping Blathnaid’s intake up when she was undergoing treatment was very difficult. We used different strategies for this such as fizzy drinks and convenient snacks which she could have between or indeed instead of hospital meals. A side effect of the treatment was altered tastes and the priority here was not nutrition but helping her feel comfortable so sharp torte tastes such as pineapple/fruit were effective in refreshing her palate.

As was expected despite Blathnaids best efforts her illness was taking its toll and she agreed to have an Nasogastric tube placed so that the bulk of her energy, protein, vitamins and minerals were provided via the tube while she slept and sometimes during the day.

As any thirteen year old girl would Blathnaid initially found this awful, however when its benefits became apparent to her she embraced it like she did with so many difficult things with her treatment. She did extremely well on the tube feeding regime for many reasons. Firstly that she understood what it was doing for her, second because her mother was so perfectly capable of giving the feed and such great support for her. Other things helped was aswell, for example, the feed design and administration system was convenient to use and the accompanying rucksack made it easy to carry around without fuss.

The other real advantage of the NG feeding is that it took the pressure off Blathnaid to try and meet her unattainable daily nutritional requirements. Now she was free to enjoy the little bits of food which tasted good to her without having to feel like she had to eat the whole lot. As she started to gain weight however the regular NG feeds improved her appetite and her oral intake improved greatly.

She gained so much weight I remember plotting her weight on the centile charts and she was delighted to see she was again at the 2 nd Centile one year on and she knew that out of 100 girls her exact age there were 2 somewhere who were lighter than her and not necessarily sick.

While a lot of the information above is not necessarily by the book, the fact that I was a friend to Blathnaid and her family and not a health professional responsible for her care gave me the freedom to support Blathnaid on her journey rather than feel compelled to lead her. So it was a unique experience for all of us. I tried very hard, made mistakes, got disheartened but persevered and most importantly I helped.

I have no doubt that Blathnaids supreme effort to give her body what it needed and her mums support and guidance in this, helped her to enjoy the special moments she had throughout her illness, gave her the strength to jump on the trampoline, the vitality to dance, and the spirit to laugh.

Ms Ruth Kilcawley,

Human Nutrition & Dietetics BSc.

Why Early Detection is Important

Childhood cancers spread very rapidly and early detection can save a life.
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