‘We wanted him to not only survive but to thrive’
Fiona Cullen shares the story of her six year old son Casper’s experience of losing his hearing through the side effects of chemotherapy. As Fiona said, “I would love it if our experience could help others coming off treatment with chemotherapy induced hearing loss to access treatment and not have to fight for it.”
My son Casper has profound to severe high frequency hearing loss. His is due to chemotherapy he received as a baby. I believe it is widely misunderstood how impactful chemotherapy is on children. Because he has a lot of hearing in the other frequencies and can keep up with conversations in a one-to-one situation with perfect acoustics, people assume it is not an issue. He did not qualify for the early intervention funding for his hearing loss to get him support as his hearing loss was considered not bad enough but we eventually were able to arrange a lot of early intervention. He wears bilateral hearing aids. His classroom is fitted with a Roger FM unit that the teacher wears. He does get a visiting teacher of the deaf at his school once a week but I know he misses a lot at school still. He started prep/Foundation this year. Hearing loss has affected him in many ways. More and more children are suffering from this due to the platinum based chemotherapy used to treat cancer. The impact this has on children should be addressed and families should be supported. Surviving cancer is wonderful, but quality of life and “thriving” should be our ultimate goal! There seems to be a lot of research on the impact of this high frequency hearing loss and the impact it has on young children in the US and other parts of the world, but very little here!
Side Effects of Chemotherapy
It was very hard knowing that Casper needed the chemo to beat the cancer but also knowing just how devastating that could be on his poor little body should he survive. We always tried to be as positive as possible that Casper would make it through and we are so happy that he is still with us, but it has had a huge impact on the child that he is and has certainly left him with a number of challenges. At only six, he still does not fully understand the difficulty that his hearing loss causes him and the impact on his learning and education but is just starting to ask a lot of questions.
He says, “I can hear without my ‘earin’ aids” and whips them off to show people that he can hear, but the extra effort in listening and more importantly processing takes its toll. He gets very tired and very emotional. The effects of chemotherapy can continue to cause ongoing deterioration for up to 20 years on all sorts of areas, including hearing. The younger a child is at diagnosis, the higher the dosage of chemo and the types of chemo and/or radiation determine how likely the child is to have side effects and developmental delays. I would love it if some sort of study could be done here in Australia following children with chemotherapy related hearing loss and the struggles they have in the education system following this. It sometimes felt like he was “not deaf enough” to get support and I had to really push to get him help.
We were told Casper should have a hearing test prior to his treatment commencing and then one after every round of cisplatin chemotherapy. It was not till after his second round of cisplatin that I realised he had not had a baseline hearing test and had to push for it at the Royal Children’s Hospital here in Melbourne. His hearing was perfect. Then after the next round of cisplatin, his hearing was starting to deteriorate. Once the deterioration started, we discovered that the antibiotics he was on were also ototoxic. Unfortunately he was having very high doses of these. We only discovered this through our own research.
We also discovered that high dose vitamin E was being studied in adults in Italy to reduce ototoxic effects of chemotherapy and that it was found to be having a profound impact in reducing the hearing loss side effect by preserving the hairs in the ears. My mother made contact with Professor Pace who was conducting the study but found that it was not being used or studied in children yet. We pushed to have Casper’s antibiotics changed to those without ototoxic effects. We also asked if Casper could have alternative chemotherapy but it was considered that the one being administered was thought to be the best for treating his cancer, despite other protocols being used in other countries when treating his type of cancer.
With more children surviving, they need support to deal with the side effects
We were stuck between a rock and a hard place, so to speak. We also asked if they would consider putting Casper on vitamin E but they were not interested in even looking at the research or contacting the researchers. I understand they wanted to win the fight against the cancer but with more and more children now surviving childhood cancer, there is going to be a large number of children struggling and requiring a massive support network to deal with the side effects to children’s hearing of platinum based chemotherapy.
We were told that he did not need to wear hearing aids but it was up to us if we wanted him to. Therapists we were in contact with also said that we could wait until he finished treatment. It felt like it didn’t matter because he might not survive anyway. In our minds, we could not think about if he did not survive. Even though the doubts were there we always wanted him to not only survive but to thrive.
The effects of the hearing loss became clear to me as he had started to say a few words eg; “mama, more, hi, bye”, but when hearing loss occurred he almost instantly stopped using his words. He also started to hate music therapy which he had always loved. He screamed if I took him and covered his ears. He hated it if I had the radio on in the car, or even if I sang to him. It was heartbreaking. He seemed to be confused by the change in his auditory world. The day he got his hearing aids fitted, it was obvious that he was hearing more. As we drove home from our local Hearing Australia office he smiled along the way at all sorts of “new” sounds.
Early intervention was not considered a priority for Casper. When we did contact the relevant therapists, they were very moved by Casper’s journey, but still did not see that he would need much support as his kind of hearing loss was, and is still largely considered “not that bad”. It makes it very hard because as soon as you are out of the oncology world you are left to your own devices with little guidance about how and where to access support.
We googled and found EEP – the Early Education Program for Deaf and Hearing Impaired Children in Brighton, who were close to us and they were wonderful. It took a lot of work from the team there to help him adjust to his new world and to wearing hearing aids. They worked closely with me and my husband to help us all through this tricky transition post treatment and we worked with a speech therapist to help him with his language quirks. As supportive as they were I had to work hard to get him the minimal support they were able to provide because even they could not access much funding for him.
It was wonderful to see the post from Cassandra about her son and how her son was able to articulate just how great the impact was for him. Just nice to know that we are not alone and others are struggling with the same issues and feeling somewhat misunderstood.
Chemo damage at such a young age has a massive impact on children as the effects are far greater on their developing bodies. The younger a child, the worse the side effects are and the more it affects their overall development. There are more and more children being diagnosed with hearing loss after cancer treatment. I think it seems more common now but that is most likely because children are actually surviving cancer at much better rates. Now therapy needs to move from concentrating solely on survival rates but also on how to help those that survive to thrive. Even since Casper’s treatment which was only five years ago, there is more vigilance with hearing testing. I sincerely hope that the deaf community can connect with the oncology community to help the children coming through. The thing I found hardest was accessing early intervention.
I think it would be great if oncology and the deafness communities could work together more to ensure these kids are getting support and that their needs are understood and not dismissed.
If you are going through a similar experience, Fiona recommended the following article on monitoring oxotoxicity. She also suggested this article on vitamin E reducing ototoxic effects. This is the website for Professor Pace who has conducted research into Vitamin E and its amelioration of the effects of cisplatin and who has been happy to engage in email communication.
If you would like to respond to this article, we will post it on Facebook so you can share your comments or send a message there. You might also like to go to Fiona’s blog ‘Casper the Great’.