Jess’s story

When Sam noticed something strange happening to her 13 month old daughter’s eyes, she didn’t think too much of it at first, but within a week her precious baby, Jess, was in hospital undergoing surgery on a brain tumour. Here Sam tells us Jess’s story and how the  Children’s Hospice at Home team has helped her family over the last seven years:

pepper foundation children hospice at home care

“I didn’t mention anything to my husband Ben when I first noticed Jess doing something funny with her eyes.  I thought I’d wait and see if he noticed it too as he was caring for her the next day while I was out with some friends.  One of the first things he said to me when I got back was to ask about Jess’s new trick with her eyes.

“I called the Health Visitor on the Monday and she asked me to bring her into the clinic on Tuesday.  At first she didn’t think it was anything serious but she did advise me to see my GP which I did on the same day.  We were seen at the hospital for tests on the Wednesday and Jess had an MRI on Thursday and that was when she was diagnosed with Craniopharyngioma – a rare type of benign brain tumour in the pituitary field.

“It was a measure of the seriousness of her condition that they operated the next day to drain the tumour and insert a reservoir. However, the cerebrospinal fluid kept leaking and affected the wound so they had to insert a shunt before we were allowed to go home.

“Once we were home, we were introduced to the Children’s Hospice at Home team. I think Ben and I were still in shock at this stage. Within a week we had gone from having a normal, healthy baby to a very poorly one and the nurses really helped us cope with this transition.  They were able to spend time with us and explain some of the technical medical jargon as well as help us with the more practical side of Jess’s care.

“Unfortunately, Jess’s tumour grew back quickly and she had another operation. The surgeon told us that it would be dangerous to keep operating though and recommended that she have a course of Proton Therapy that was only available in America.

“Within a few short months we were on a plane to America taking our daughter for pioneering radiation treatment designed to treat the tumour while minimising the effect on the surrounding brain tissue.  Despite the precise nature of the treatment, Jess did lose her eyesight as a result and we were told that she would not see again.  But, against all the odds, she did get some sight back.  Her optic nerve is very damaged and the doctors don’t know how she is able to see, but we’re just really grateful she can.

“During the next two or three years Jess was constantly in and out of hospital.  Her tumour was very good at being unpredictable! It was actually more daunting for us to be at home during this period and when we were there, the Children’s Hospice at Home nurses were a godsend. Every sign and symptom was worrying and it was so reassuring to be able to call up and talk things over and get some specialist advice.

“The nurses were also a great help when Jess started at pre-school.  Because of everything she had been through, Jess had developed separation anxiety and she refused to go.  With the help of the nurses who would take her out without me, we were able to build her up slowly and they even helped by dropping her off in the very early days.

“Jess now attends a mainstream school and her condition is stable at the moment.  From the outside, she looks like an able child but as a result of the Proton Therapy she only has one artery working fully in her brain. She suffers from mini strokes which take her anything from an hour to a day to recover from and which mean she has to have someone with her all the time.  Even at school she has one to one help. We’re adapting to this now and we know to take things slowly with Jess as rushing may trigger off a stroke.

“Jess is a happy girl.  She does have learning difficulties and sometimes she struggles to grasp simple instructions or explain things.  She is starting to be conscious of the fact that her movements are slow and she can’t always do the things her friends can and this can lead to bad behaviour sometimes. She does love arts and crafts though and she’s very creative.

“Because of all the time she’s spent in hospital and around adults, Jess definitely prefers adult company to being with other children which can make it difficult at times with her two younger sisters. It is very hard for Emily and particularly Harriet because sometimes I do have to drop everything for Jess.  Emily is still very young so I get to spend time with her during the day while Jess is at school, but Harriet it out at school then too, so we have to make sure that we build in one to one time for me and her as well.“The weekly visit from the Children’s Hospice at Home nurse is a huge help.  She comes after school and helps out with Jess, giving me the chance to be with Emily and Harriet. I can’t leave Jess with many people because her condition is so unpredictable, so it’s really reassuring knowing that someone who is medically trained is there to help out.

“All the admin that goes with having a poorly child can also be a challenge and the nursing team will always offer help and advice with anything from schooling and medical appointments to applying for grants to help with our building extension.

“We also really enjoy the Family Fun Days run by The Pepper Foundation for the children in nurse’s care.  They give Harriet a chance to meet other siblings and Jess to meet other children who are poorly and Ben and I have made some lovely friends through the family days.

“Because of the unpredictability of Jess’s condition, it is hard to know what the future looks like.  She should lead a relatively happy life but she will always have challenges.  She will be on lifelong medication and because of the part of her brain that is damaged, she won’t be able to have children or go through puberty naturally. The major risk for Jess though is a full-blown stroke and it’s all about getting the balance right, especially with her medication.

“Having the help and support of the Children’s Hospice at Home nurses has been so important over the years.  Just to have someone there who knows and understands has been invaluable.  With the nursing team there are no labels, Jess is just Jess, and the nurses have really helped me adopt this attitude too.  Whether we are at home or in hospital, day or night, I know I can call and that is so reassuring.”

October 2018

The Pepper Foundation can only help to fund this vital nursing service with the support of our community. Please consider donating to the Pepper Foundation today to help more children like Jess who are receiving Hospice at Home care. Thank you.