The End Is Here


The end is here. No parents should ever have to face the end of their child’s life or have to bury their child.  Unfortunately though, some children do lose the battle. Still, they and their families always remain a part of our neuroblastoma family.

Like every stage of a family’s neuroblastoma journey, the thoughts and questions that arise at end of life vary depending on the child’s disease and many other factors. There simply are no “right” or “wrong” answers when one is facing the loss of a child.

This topic can bring a lot of pain and is hard for many. Coming from parents who had to face the end with our child, we can offer this support.

Some questions that arise may be:

When Should Transfusions Stop?

A lot has to do with whether the child is eligible for any clinical trials, where the disease has spread to, how old the child is, can the child travel, and is the child is pain. Parents don’t want to give up. They don’t want to admit that the cancer won. We fought till the day our little girl passed and not a day sooner. But for others, it may be different.

What Should Be Considered With Choosing Hospice At Home Or The Hospital?

When answering this you need to ask yourself how comfortable you are with giving medicines, especially narcotics such as morphine. Also take into consideration how mobile your child is. For us, being home allowed us to spend more time with our daughter. Her pain was controlled, and we did everything except make changes with the morphine pump. Her nurse came out every day to check on her and make any necessary changes.

Consider the child’s age; they may not want to be in the hospital anymore. The goal of Hospice is not to help cure the child; it’s to help with the quality of life.

How Do You Make The Time Special?

It all depends on your child’s condition, but if your child can still go places in comfort, do it. Take video, lots of video of your child. Lots of pictures. Make sure to get their voice recorded, touch them, smell them. Let them do what they want to do, but cherish every single second with them.

How Do I Talk To My Child With Neuroblastoma?

It all depends on the age. Young children don’t understand dying. This is something that as parent, you follow your heart with. Just remember to be honest and listen to what your child is telling you. Children have been known to see angels.

How Do Siblings Fit In?

Depending on the age, be honest. It’s not going to be easy, but they need to be prepared for what’s to come.

What About Other Family & Friends?

Anyone that wants to help, just let them.

What Do I Need To Know About The Dying Process (since no one is telling me about this)?

This all depends on the child and where the disease has spread to. Some start to sleep more and just peacefully pass, others have several problems such as vomiting, blindness, seizures and much more. Talk to your oncologist who knows your child.

When it comes time for funeral arrangements, some do it ahead of time. Some wait. If you do it ahead of time, chances are everything will be done the way you intended it. For us, we waited. Things ended up very close to what we wanted, including the balloon release.

For us, we wanted to make sure our little girl knew the impact she had on others, that she put up the best fight and we were proud of her.

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