Cancer In Young Adults ... Through Parents’ Eyes

Narratives & Stories

Felicity and Donna's Stories

Felicity and Donna are sisters and were both teenagers when diagnosed with different cancers several years apart. Donna’s cancer was acute lymphoblastic leukaemia and Felicity’s was Hodgkin’s Disease.

Surviving the Experience

The Family at present:-

DadDonald – Company Director
MumAnnie – Part-time nurse, Highland Hospice/Housewife
DonnaEldest daughter (aged 21 years). Studying Occupational Therapy at Queen Margaret’s College, Edinburgh (Diagnosed – A.L.L. 1991)
FelicityYoungest daughter (aged 17.5 years). Trainee Dental Nurse in practice. (Diagnosed – Hodgkin’s disease, February 1997)

Parents born and bred in Orkney Isles and both girls born there also. We moved to Dingwall in February 1983 where we have lived since.

The following are some of the difficulties we encountered as parents of teenagers with cancer.

I think it would be fair to say that our first difficulty lay in getting a diagnosis.

Donna was diagnosed with Acute Lymphoblastic Leukaemia after a four-month history of various intermittent symptoms, which became progressively worse.

She started in the October with a sore leg – (GP diagnosed growing pains) then a sore elbow (diagnosed as tennis elbow) then lack of energy at school particularly physical education which at first was diagnosed as ‘school phobia’ followed by ‘problems at school’ leading even to ‘problems within the home’!!

By late December/early January she had pains in her jaw at which point we saw the dentist followed by an ENT specialist. Eventually a tooth was removed and found to be perfectly good. Her nasal/sinuses became congested as if she had a heavy cold all the time and she spent many nights inhaling menthol, kneeling over a bowl on the kitchen table.

Her pallor became more marked and she generally started to look ill. We became increasingly worried and frustrated at the lack of progress we were making but it seemed difficult to convince others e.g. doctor, dentist, school, etc, that there was something seriously wrong with Donna.

Eventually one evening we noticed that whilst sitting on the floor, Donna was unable to get up without pulling on the adjacent furniture because of the pain in her knees. This was the last straw and on the 3rd February, we demanded that the GP see her first thing in the morning and that he take a blood sample to at least remove any doubts in that direction.

By the afternoon the diagnosis of A.L.L. was confirmed and she was admitted to the local hospital in the evening for intravenous infusion prior to transfer to the Sick Children’s Hospital (specialist unit) the next morning (5th February 1991 – A Wednesday)!! What stupid things you remember!!

Mum chose to tell Donna what was wrong with her – not an enviable task, I recall. I made it very simple but positive and truthful – she didn’t ask questions at that time, for which I am truly thankful.

For the next two years almost, Donna underwent chemotherapy with inthrathecal methotrexate to treat the central nervous system. She coped reasonably well with long spells in Glasgow and short spells at home with shared care between, Inverness and Glasgow. We found it particularly hard trying to give time to each of the girls. The distance involved between Dingwall and Glasgow being almost 200 miles (400 miles return trip). Mum usually stayed in Glasgow with Donna and dad and Felicity would come down at weekends. When business would permit, dad would stay in Glasgow and mum could go back to Dingwall to be with Felicity for short spells.

I vividly remember Fridays and Saturdays being ‘Good Days’, Felicity being contented to just be with us in the ward as a family – then Sunday would come and everyone would be quiet, knowing it was back to Dingwall, school, work, etc!!

We were also fortunate that my mother was able to move into our house and keep everything running as normally as possible under the circumstances. Friends also rallied round and took it in turns to visit us in Glasgow despite the distance involved.

During this time, Donna’s education, although suffering, was undertaken when at home by tutors provided by the Education Department in Dingwall, and by the hospital teacher when in Glasgow.

Towards the end of her two years treatment Donna relapsed in the Central Nervous System – this was picked up on a routine examination. After all we had said about having to travel to Glasgow each month – how grateful we were that this was picked up, as she had no other outward symptoms.

Needless to say, we were all very disappointed, just when we thought we were beginning to see the light all of a sudden we were back to square one. We tried very hard to pick up the pieces cheerfully (if there is such a thing) for Donna’s sake. To make matters worse it was just two weeks to Christmas and our wonderful plans for the festive season seemed to fly out the window. Nobody felt like celebrating, but we did try very hard, all of us in our own way, and we returned to Glasgow on Boxing Day for the next stage.

This time Donna was to be involved in an Autologous Transplant as her sister, Felicity, proved not to be suitable match.

Between January and June of 1993 Donna had to undergo intensive chemotherapy and radiotherapy prior to transplant. She was particularly ill after the ‘chemo’ and at one stage had to spend a short spell in ITU due to fitting which we never found the cause of, but she rallied round again and surprisingly enough sailed through her radiotherapy and her transplant coming out of isolation in under three weeks. (Funnily enough sometimes the things we dread most turn out to be OK and what we expect to be ‘run of the mill’ can be quite the reverse!!)

It was in fact during this time – while having attention from a Malcolm Sargent Occupational Therapist to herself – that the seed for her future in occupational therapy was sown.

After a recuperation period post-transplant, Donna continued with part-time education going to school when fit and having home tuition as well. She managed to sit and pass four GCSE’s which was quite an achievement under the circumstances. Up to this point we had been dealing with two heads of departments in her local school – one for 1st and 2nd year and the other for 3rd and 4th year. Both had been very understanding and accommodating with Donna’s needs and illness. However, over the next two years 5th and 6th years were about to change dramatically on this front.

Donna wanted to make a normal return to school of the first day of term in fifth year to outwardly appear the same as her peers hopefully building up her strength such that she would be able to attend full-time again. We had assumed that the head in question would be fully aware of her past and present situation. For those who attended school regularly there appeared to be a big transition from 4th to 5th year never mind for someone who had only attended irregularly.

To cut a very long story short, I remember collecting this poor distraught soul at the end of the first full day who really did not know whether she was coming or going!! What really annoyed us was if you knew anything at all about Donna and what she had gone through over the past four years, quite uncomplaining – much more than the average adult will go through in a lifetime – and yet it took a disinterested, disorganised teacher less than one day to really rock the boat. Needless to say our relationship with him did not start on the best footing!

Through 5th and 6th year he continued to be unhelpful and obstructive. Donna had to have higher biology as a precondition to being accepted for Occupational Therapy and for one reason after another the school could not accommodate this in her 6th year. We felt this was unreasonable considering her capabilities and desires but because all the places had been allocated in her absence there was no way the school could fit this in.

At this point we felt the school was being quite unreasonable and in effect jeopardising her future, and we decided to speak to the Director of Education for our area. Co-incident with this we had been staying at dad’s sister’s house in Edinburgh who is a primary school head teacher but also is the ‘special needs co-ordinator’ for the school. We were relating all of our troubles with our school to her and she pointed out that Donna should have been receiving ‘special needs care’ throughout all her time at school. We were quite gob smacked as we were not aware such a thing existed and here she was now in sixth year.

We spent many hours researching “special needs” as it applied to our daughter, thanks to my sister and were suitably armed with this information when we tackled the headmaster and Director of Education.

The end result of this was a couple of months battle with the education authorities. As far as the “special needs programme” they freely admitted that this existed and that we would have been entitled to it had we asked for it!! I wonder how many parents know such a programme is available. Parents are already too caught up with the illness and getting from one day to the next that they do not have the time or inclination to research these things assuming that responsible authorities will provide what is ever in their power to grant. We felt really let down by the system and guilty that here we were at the end of Donna’s school education – but what could she have achieved had we been aware of and utilised this “special needs programme”?

The net result of our meeting with the authorities was a new expensive parent handbook given to every child in the school, which had the additional information about “special needs”, outlined within it along with the other standard bumf. (You’ve heard it before but they don’t have money for books!!). As for Donna’s biology they offered her “distance learning” i.e. correspondence course, which she tried but time was running out, and she really needed a teacher on hand to help with her studies. As a last resort and at our own expense and her extra time she enrolled in evening classes at the college in Inverness and she successfully achieved her higher biology despite her local school.

The school on the other hand, took on board the “special needs programme”, the headmaster retired and a new one appointed, and we have since learned that parents of children with any handicap are made aware of this “special needs programme” at the outset, which we find somewhat gratifying.

Donna obtained a further three highers in English, maths, and modern studies and was accepted for Queen Margaret’s University College in Edinburgh. She has now completed her third year and is going on to her honour’s year after the summer break. She is now six years post transplant and continues to attend the Glasgow hospital annually – which has become a bit of a chore in her eyes – and leads a full and normal 21 year old college life with all the usual pitfalls.

I will not go into Felicity’s illness in great depth, as possibly one story is enough, but I will touch on it briefly, as I think you might agree that it is unusual to have two teenagers with two different cancers within the same family. – Please tell us if you think differently.

Felicity came to her mother with a lump on her neck in January 1997 and we attended our GP (Donna’s had retired by now) within a few days. In two weeks she was seen by an ENT specialist. Something in my heart told me all was not well – the lump was not like a gland, it was like a rubbery nodular lump/lumps and quite big. Everyone kept saying it would be OK even our own GP but despite this we worried. Was it possible that she too had a cancer?? We remembered asking the doctors in Glasgow after Donna was diagnosed if Felicity could get cancer as well and were reassured that the chance of two sisters in the same family having leukaemia were extremely rare if not unheard of.

She had a biopsy done shortly after seeing the ENT consultant which confirmed Hodgkin’s Disease. As always we didn’t make a fuss, especially for Felicity’s sake, but my heart was at my feet. I remember thing; well at least it is not a brain tumour – given the choice!!

The treatment in comparison to leukaemia is much less aggressive and that seemed to lesson the gravity of the situation. Felicity was obviously doing her own comparisons and asked three questions from the consultant:-

  1. Would it be two years treatment?
  2. Would she lose her hair?
  3. Would she have to go to Glasgow?

As the answer was NO in every case the illness was no big problem in her eyes. She started “chemo” (oral and IV) for about six months and things seemed to be going along fine until she developed another small lump on her neck during the October school holidays and unfortunately the disease had returned.

There then followed some more intensive chemotherapy and radiotherapy and determined as ever not to lose her hair, she endured the “cold cap” method quite without complaint much to the envy of adults who could not tolerate it. I have to admit that her perseverance brought success and her hair loss was negligible but it must have taken some will power on her part. I was frozen just watching her.

All her determination has paid off and she now looks and feels well. Her education was not a problem this time round as attitudes and staff had changes at the school. (Or perhaps the we were becoming know as trouble-makers? – I don’t think so, just jesting!!) She obtained four GCSE’s in fourth year and left school at Christmas in fifth year to pursue a career in dental nursing as a job had become available at a practice within our hometown. She is now in her second year and enjoys every minute. She has passed her driving test and has bought her own car and is now planning her 18th birthday. I don’t think you can get more positive than that.

There are some interesting observations which have resulted from our experiences which possibly deserve airing at this point over and above the factual details of our experience.

Quite apart from recognition that the whole family have gone through abnormal situations and I would submit become the better and closer for these experiences one of the most educational aspects to this was how others coped with this.

It became immediately apparent who our true friends were. As for relatives, well we guess that some just didn’t know how to cope with this and preferred to avoid the confrontation. This, I’m confident will be borne out by other parental stories.

Along the way we made many very good and sincere friends:- Parents in similar situations and medical staff. Indeed, at a time when it is all to popular to knock the NHS, in these situations it excels.

I must also pay credit to the dedicated nursing staff who attend to their paid normal duties, but also by the very nature of their long term patient relationships become attached to them even to the point of attending funerals one moment and yet managing to come back smiling to get on with the days work. To the consultants who get on with their days (nights) work and yet find time to contribute to the ongoing research.

Throughout it all we had a lot of laughs along the way.

Parents probably play the most important unsung role of being supportive to one another.

And when you are really down there is nothing like a children’s oncology ward for bringing you back to earth with a bump. There is always someone far worse off than you think you are – and if you think you have troubles, wait till you get knocked aside in the corridor by a bald-headed, one-legged kid towing a drip trolley at high speed!!