Bereaved sibling support

Harvey Hext Trust- Memory boxes and memory bears

Bereaved siblings.

When Elizabeth became poorly last May (2017) we were very honest with the children upon diagnosis.  We told them the tumour had been removed but that she would intensive chemotherapy.  We also made them aware that the doctors would do everything they could to make Elizabeth better but that she may not be cured, and the cancer might come back.  We also discussed how the chemotherapy would make her very poorly and it would mean I would be spending a lot of time in hospital.  Ella understood the most I think, and all the children understood to a certain point, they were also very concerned and always commented on how brave she was! The children particularly hated her daily injections (GCSF) in between chemotherapy to help bring her blood counts back up ready for the next dose of chemotherapy.  Elizabeth always cried, and I usually had a little panic before I gave it! However, Elizabeth always stopped crying quickly and could usually be seen smiling again within minutes!

Elizabeth finished her chemotherapy on Lucy’s 6^th birthday 2018.  When the MRI and ultrasounds were clear we were over the moon and life returned to normal for a few weeks.  All the children were so attentive with Elizabeth; Ella would cuddle her and push her around on her toy fire engine and Johnny and Lucy loved playing on the toy farm with her.  We still discussed with the children that the tumour could come back, but they commented on how well she looked.

When Elizabeth started to show signs of relapse in March 2018, it began with some grizzliness and a night of her being in quite a lot of distress.  The next morning, I told the children I would probably be taking her to get checked over in the hospital.  They were happy if they could stay with Daddy and spend time on the farm! Elizabeth was not actually seen until the following Tuesday and she was not seen until later in the afternoon.  I remember Lucy being really upset that I wouldn’t be picking her up from school.  They were good about getting home late etc, but I could tell they didn’t like returning to the old routine.  The following day when Elizabeth had had her scan and it had conformed a relapse, we talked to the children and told them Elizabeth was going to die.  We all sat on our bed and cried and although Johnny probably didn’t understand that Elizabeth would not have much longer with us I think he sensed we were all very upset, but it was important for us to all be together and all on the same page.

The following day, the Thursday, we discussed moving to a hospice on the Friday.  Later that day I drive home leaving James and Elizabeth at Exeter Hospital.  I packed a few suitcases and everything I thought we would need but twenty minutes after I had started the children came home from school.  The children quickly get changed and then we head down to the hospital.  That evening our nurse helps us to do hand prints of everyone and the girls are desperate to cuddle Elizabeth.  James goes home with them that night and then the following day they come to the hospital first and then follow Elizabeth and I in the ambulance up to the hospice. 

Within an hour of arriving at the hospice the sibling worker introduces herself straight away and begins making slime and play doh with the children.  Throughout our stay they play with them, do some music therapy and do some activities which give them the chance to talk about feeling and memories.  The sibling worker also passes on books which they think may help the children understand what is happening to Elizabeth and the rest of the family.

The day Elizabeth died the sibling workers were also there to supervise the children playing.  Ella stayed close by, but Lucy and Johnny went off to play in soft play.  Over the subsequent days they continued to work with the children and talk about feelings, making sand bottles and making rainbow footprints.  They made sure we knew they would still be on hand even when we left the hospice.

We left the hospice on the Monday after Elizabeth had died and although it was lovely to be home in our own surroundings we felt conscious that the children were ‘on their own’ now and it was up to us to make sure we supported them as best we could.  Our CLIC social worker helped with useful books and a memory book to work on together and school were also very supportive.

Soon after we arrived home I found a link to a charity called the Harvey Hext Trust and applied for some memory boxes for the children, alongside a memory bear where you could write memories and put them inside the bear.  The memory boxes are wooden and are covered in beautiful family photos and each personalised to the child.  I also developed a photo book which had all the photos from the hospice inside it.  Inside the memory box we included all the art from our time at the hospice, keyrings (the girls had made 2 each; one for the coffin and one for them to keep), a couple of Elizabeth’s favourite outfits each, a blood collection bottle (Elizabeth loved to hold it!) and one of Elizabeth’s teddy each.  We have added to the boxes since then with a Disneyland brochure and fundraising badges from a children’s cancer charity and the Grace Kelly Ladybird Trust  We have also had some very kind presents; a bunny rabbit made from Elizabeth’s clothes which weighs the same as she did when she was born, a beautiful patchwork quilt also made from some of our favourite babygros and lastly 3 taggies made from Elizabeth’s blanket and another babygro. The children (especially Lucy and Ella) keep these in their bed with them.

The Harvey Hext Trust also help to give bereaved siblings fun days out, this year they took children to Puxton Park.  We were unable to go but really hope to make the next trip.  I think it might be useful for them to meet other children who are in a similar situation.

There has also been some input from Winston’s Wish and more recently the girls have been referred to a local charity called Balloons.  Balloons only become involved 12 weeks after a death in the family as apparently this is when the realisation that the person is not retuning occurs.  It is hard that there appears to be very little support for Johnny and I do think he has found it very confusing throughout the last few months and seems to be very angry, although it is always difficult to know what is age specific and what is grief?  Our CLIC social worker is still there for us and the hospice keep in contact.

The best way I feel I can help the children is to give them time and time to talk.  We always talk about Elizabeth and I don’t ever want that to stop.  I wish I could take away their pain and confusion, but I know we need to work through it together.