Meggan Noonan

OUR WARRIOR HUGHIE 💙

Saturday 12th Apr

I am doing this challenge as it is very close to our heart as a family. Young live vs cancer have supported us when Hughie first got diagnosed both financially and mentally , aswell as many other families on the tough journey. 

Hughie was diagnosed with Retinoblastoma at just a day old when he was just 4lb 12 in neonatal. After 3 days we got transferred to Birmingham to see the extent of Hughies tumours under a general ansethtic. We then got 3 precious days at home , before Hughie started his first round of systemic chemotherapy. At the end of the first round of chemo I noticed his breathing was not right. After convincing the doctors that my instincts was right , within a couple of hours and a few test Hughie was also diagnosed with a coarctation in his aorta in his heart. 

We was moved straight to picu and Hughie was put on medication to help his blockage but had risks it could stop his breathing. The next day we was transfered via ambulance to leicster hospital to discuss next steps. This was tricky due to his nutrifil levels and other levels due to the effects of chemo. Discussions were had between Birmingham,  leicster and Qmc hospitals to ensure the best outcome for Hughie. 

He couldn't have his surgery on his heart for 5 weeks as this was the safest time. This was because he was badly at risk of infection, low blood levels and overall vulnerability. Thought out our time we had a grant from young live vs cancer , support via telephone , total understanding if we couldn't be available for the booked in phone calls. This helped us so much as we still had bills to pay in a house that we couldn't live in , buy clothes as all we had was the hospital bag and toiletries for the week we had planned to be in and they also offered great guidance of where we could get further help, which helped a very emotional,  stressful and difficult situation be a little easier. 

Even though your child is ill and your life comes crashing down , you still have the everyday worries too. 

Fast forward Hughies recovered well from his co arcatation repair and we had two weeks for full recovery and then he started his second round of chemo. The phone calls of support were amazing because we couldn't even see family and friends much to protect Hughie from his vulnerable situation and sometimes you need just a normal conversation or someone different to speak to to side track from the heart ache and trauma. 

Overall Hughie had 6 rounds of chemotherapy,  he became unwell at some points with viruses (we only went to hospital and home ) during this time, had blood transfusions , 100 of blood tests and many other procedures. 

We got to know many very strong,courageous children and parents who also recieved excellent support too from this fabulous charity from birth to teenage years. 

After 6 rounds of chemo hughie went on to having two chemo injections into his eyes as his tumours grew again when he finished systemic chemo. He had laser treatment ,cryotherapy,  billions of eyebrows,  eye catching and 100s if not more of general ansethtic. 

We are at the stage where his tumours are inactive and have been for around 6 months but there is still a high risk they can come back. This risk lowers a little when he is two which is in June. 

He continues to keep growing and thriving regardless of what he has been through anx is constantly so happy in life, which has gave me and his daddy so much strength to carryon. 

We would like to thank young lives vs cancer for their previous and ongoing support to all families of children experiencing or have experienced cancer.  Please donate if you can because it will certainly help in very very difficult times.  Xx