When a child finishes cancer treatment and the family are together again, sometimes after a very long time apart, you may want to offer your congratulations and celebrate with them. It’s natural to think that once treatment is over, the child is in the clear, however this is not always the case. Although the family has turned a corner, finishing cancer treatment comes with its own set of challenges as they step into to their ‘new normal’.

Families can experience a range of emotions and more commonly, unexpected feelings around returning home. Sometimes a parent or carer may tell themselves, “I should be feeling happy my son is cancer free… why don’t I feel happy?”

The fear of their child’s uncertain future and the possibility of relapse is all too real, and moving forward can come with its own challenges.

Fiona’s daughter, Matilda had a bone marrow transplant last October and have recently gone to monthly checkups. Matilda won’t get an all clear until October 2024, two years post the transplant, if the cancer doesn’t relapse.

“We know she can still relapse, and the statistics for relapsing are a little bit scary. They’re higher than what I would like them to be, so I won’t be able to relax until October next year. Our transplant doctor has told us that it’s just so rare, they almost have no cases of any kids who had Matilda’s cancer who relapse after two years, so we just have to get there.”

Being constantly surrounded by doctors and nurses to then being at home without around the clock support can be a hard transition to make.

“I had a coffee catch up with two Redkite counsellors and other moms about the real mix of emotions, because I feel like I should be celebrating but it’s actually hard because all of a sudden Matilda’s ripped off all of her support that we’ve been on for the last year and a half. It was great for me, my job was going into the hospital, seeing the doctors, seeing the nurses, seeing the other families. All of that became my support network, and then to suddenly lose that so quickly, it’s a little bit confronting in a way.”

If the child is receiving outpatient treatment, it can be stressful going to and from hospital constantly.

“We told our family and friends that we only have to go to hospital once month and Matilda’s doing really well, and people are sending us bottles of champagne and other gifts and I think about how we still don’t really feel like celebrating, so it’s just a bizarre situation to be in. It’s good but it’s just getting used to the new normal.”

The child can require a high level of care due to low immunity so adjusting to other people can be overwhelming. It can be a challenge to explain to family members, especially siblings that their child can’t play like they used to.

“You could have the best friends and family, but no one is going to understand what you’re going through like the other families that are in the children’s oncology ward. There is that knowing, that understanding. There are a lot of kids and families you get to know, because you’re staying in the same ward as them all the time.”

Adjusting back into the home environment after cancer treatment can take time for the child and parents. Life during cancer changes so much that returning to how life was, is nearly impossible. This adjustment period or transition to reality back home, could be a short amount of time, or it could be ongoing for many months to years. Extended family and community support can lessen the burden of this transition. Meeting and understanding where the family are at in their journey can take the guess work how to best support them in their time of need.