My name is Linda, and I am a past parent of St. John’s Ward and Family Support for Aoibheann’s Pink Tie. Recently I completed a challenge of walking 5k a day for 100 days. What started out as 5k a day for 30 days to help raise funds for Aoibheann’s Pink Tie turned into 5k a day for 100 days.  

 I have “walked the walk” as a parent of a child with cancer and personally. While walking 5k a day for 100 days is no mean task and comes with different challenges none will compare or ever be as hard as the walk with your child through childhood cancer.  

While walking 5k a day, I couldn’t help but be brought back to days of forgetting clothes and toiletries for myself, having €2 in my pocket knowing it wasn’t enough if I needed to go to the chipper and the lonely weekends just wanting a treat be it savoury or sweet. Something that if you were at home, you could just take from the press.  

The services we provided free of charge and are born out of the “lived experience” and tell a story of forgotten items in the suitcase, tears instead of smiles and travelling before the sun rises and after it sets. 

Have you ever gone on holiday only to realise you had forgotten a toothbrush or a towel? Unlike a holiday a parent packing a suitcase for a child’s stay in hospital is one that can possibly be very last minute and it’s throw what you can into a case or bag and go. A parent will always put their child first and could very easily arrive to the hospital with nothing packed for themselves and this is where our emergency pack comes into play.  

This pack contains, towel, toothbrush, toothpaste, deodorant, shower gel, lady’s sanitary items, comb, bobbins and the all important cup for the much needed cup of tea or coffee. We also leave pj’s on the ward for emergency situations. The feeling of fresh pj’s is something that ozzes comfort. 

Going on holiday with a sick child is rare but we do organise respite days away in hotels and there is nothing worse than organising a hotel while keeping the availability of a pool in mind. Children receiving treatment for childhood cancer can’t get their line wet and as a result can’t have showers, baths or swim. We provide drysuits which are specifically made to fit the child. These suits are sealed at the neck below elbow and knees and provide reassurance for the parents that the child’s line won’t get wet and they can splash and laugh with their super siblings.  

We have been providing hotel accommodation to parents since 2017. Traveling around the country for different reasons is never lost on me. While travelling to Donegal recently I couldn’t help but think of the stress parents must endure when having to wake a sleeping child at 3am to go to Dublin for treatment knowing they will have to do this same journey home later in the day exhausted. 

 We also provide a teaching tool for the children otherwise known as chemoduck. This duck wears a bandana and has a Hickman line. It comes with two books and helps the child explore what is happening. Children get to understand what is happening and they can in turn bring it to school for show and tell. 

 We are all aware how expensive Christmas is and there are many parents who will go without food so their child will have the toy they want from Santa. With this in mind we provide food hampers at Christmas to help alleviate some of the costs. 

 Our financial grants are given on initial diagnosis, during treatment, when a child relapses and if a child dies. These grants very in amounts and will be given following a call from a social worker. 

 Also, on this 5k walk I was brought back to memories of children who I have met and unfortunately, they died. These memories brought many smiles for me because most of them involved me remembering the names they gave me and the way their parents would be so embarrassed. I have been called the crazy lady from Moana and a princess with lovely nails. We remember these children on their anniversaries and birthdays and every year at our Remembrance Day. 

Super Siblings are part of the family who deserve recognition. They go through so much and give up a lot without ever complaining and it’s for this reason we send them gifts to let them know we see them and we care.  

Everything we provide is free of charge to parents including our long stay house Aoibheann’s Lighthouse. This is our home from home which is used by families who have to stay up in Dublin for longer than a month. We pay all the household costs including deep cleaning. 

 If you give €1 or €10 very cent you give to Aoibheann’s Pink Tie is helping us to continue to help parents and families and I would like to say a huge thank you to all who supported me and helped me raise €1000. I am so grateful to you all. 

Donate to Aoibheann’s Pink Tie here.