An extended stay in hospital with a sick child is at best uncomfortable; at worst it can be terrifying and overwhelming. Ursula knows better than most, what it’s like to endure the trauma and relentless uncertainty of it all. Ursula has been by her son Nicholas' bedside for the better part of two years following his diagnosis at age two of neuroblastoma*. She has had to cope with the uncertainty that surrounds his condition and has had to guide him through countless painful treatments. Ursula has seen the toll it can take on the rest of the family and been touched by the help of friends, family and strangers.
Having a sick child, when they are very young and do not understand what is going on, is hell. As a parent, especially a mother, there is a natural instinct to protect your child and you know that he looks to you for protection. This all gets out of whack when he is really sick and the doctors and nurses are having to continually poke, prod, and prick your baby as they need to do all sorts of tests, scans and monitoring. He looks at look at you with eyes that seem to plead and seem to shout out: How can you let them do this to me?'
I was racked with guilt and a great sense of having failed my child, of letting him down. I wondered if he would ever forgive me. Whilst I understood and knew that this was all necessary, I knew that he didn’t, couldn’t understand, and I just prayed that he wouldn't hate me. I felt helpless, hopeless and started to doubt and question 'Is my being here even a comfort?', and I defiantly wished I could do more to ease his pain & discomfort. I cannot tell you the number of times I thought how unfair this all was and that I should be the one in the hospital bed, not my baby, my beautiful innocent two year old.
My long stays in hospital have taught me many things and I hope that my experience can help others as they travel this difficult path. I have learned that it is important to:
Advocate for your child
You are the best advocate for your child, especially when they are too little or too weak to speak for themselves. If something doesn't seem or feel right, ask questions, demand to be heard and answered.
Enjoy the special moments
The holding of hands, the snuggles and cuddles as they fall asleep on you. It's these moments you carry with you through the darkest of time, reminding you why you are fighting together to beat this horrible disease.
Laughter is the best medicine. Through the crappiest of times if you can find something to laugh at, particularly with someone else, it will lighten the load and make it easier to get through the moment and the day.
Accept offers of help from others
Don’t be afraid to ask for help and to take up offers of help. People in your community as well family and friends all want to contribute and help you at this time. Let them. They will be grateful for the opportunity to give.
If people offer to cook for you, don’t be afraid to state your preferences. Meals that freezeare great, especially ones that will feed the whole family. But fresh portable meals like salads and other light meals might at times be more suitable, especially if they are to be eaten on the run or at a bedside.
People want updates, and so that you are not inundated with enquiries or endlessly repeating yourself, set up a system that works for you. Perhaps you could send out group texts and people will come to know that when there is news they will be updated with a message. Some people set up on Instagram or Facebook and others set up a blog. All of these have the facility for people to leave comments of encouragement and love that help you through these dark & difficult times.
Keep a record of your journey
Looking back now I wish I had started this at the beginning of our journey with Nicholas. As hard as it may be at times, take photos, and capture those special memories in whatever way works for you. Time spent with your child is precious, and you will want to remember that time even though some of the memories will be painful.
Don’t forget about other siblings
If you have other children, don't forget about them. They are going through this too and may often feel overshadowed by the trauma and may feel that they are missing out. If they are older they will understand but it is important to find time for them, no matter what the age.
Siblings often feel helpless and want to be able to contribute in some way. It is important to find an outlet for them to do this. In our case, as Nicholas' treatment went on, his chances of survival decreased so for our older two, it was extremely important they did something. They decided to shave their heads to raise money for kids’ cancer research because they didn't want other children to go through what we had. It was not about the amount they raised, it's about them feeling like they helped in some way. The funds they raised were never going to help Nicholas directly, but were raised in his honour. That was something they would always have as a comfort, regardless of the outcome.
Cancer patients may need numerous transfusions. While you are helpless to assist in other ways, this can make you feel like you are actually doing something
Look for the positives, however small, and focus on them.
Accept that you will have negative thoughts and feelings of dread for they will come. Acknowledge them, say, ok, I know you exist but I am now going to focus on the positive outcome I want. You have to believe and hold on to hope otherwise you'll be a mess.
Connect with Others who are in a similar situation
Close friends andfamily are with us on this journey and we could not face it without them. But no matter how much they want to, they cannot understand completely, all that we are going through. Talking to other oncology families (in the clinic, on the ward or parents room) gave us a different level of support. We shared experiences with people who have a true sense of our fears and our reality. The knowledge, the understanding and mutual empathy found with these people can make you feel that the burden is shared and somehow your load lightened.
When we returned home, after the initial diagnosis and the first round of chemotherapy, I was sewing a ripped seam on one ofNicholas' stuffed toys. He came over to where I sat and took the toy's hand, holding it tightly until I had finished stitching (which took a little longer because my eyes had become watery). For me this was a sign that yes, my being there was a comfort to him; it did make a difference. I learned from this to look for the signs. These dear sick little ones are strong, tough little fighters. And my Nicholas has shown me the way , more than once, when I started to get lost.
*Neuroblastoma is a rare form of cancer occurring most commonly in infants between the ages of 0-5 years. The Neuroblastoma Australia website has further tips for parents enduring long stays in hospital