Noah’s journey

Hi my names Amie and this is my son Noah’s story

3 weeks ago our lives changed forever. Noah was seen by the health visitor with concerns of him not being able to hold his head independently at 5 1/2 months old. The health visitor told us to get him seen by a gp, which we did straight away. The gp referred Noah to the paediatrician at burton hospital to be assessed and try and get to the bottom of everything. The paediatrician told us he had concerns about Noah’s muscle mass and his ability to fix and follow. The doctor ordered an mri scan to be done to see if there was anything wrong. On the 5th of June Noah went to derby hospital to have his mri scan. We were told as long as nothing serious can be seen we were able to go home the same day and we would get a phone call with results. However, for Noah this wasn’t the case. The doctors came and sat us in a room and this is when we realised our lives were going to change. They told us that our gorgeous baby Noah was really poorly. They had found hydrocephalus which is spinal fluid build up on the brain, which he had 5 times the normal amount of, and two brain tumours. We then got blue lighted to Queens Medical Centre, Nottingham. When we arrived at QMC, the specialist came and spoke to us and said that Noah would need a more detailed mri scan to tell us exactly what the tumours were. On the 7th of June, Noah had his mri scan done and it showed that he has hydrocephalus, an optic pathway glioma, and they still weren’t sure what the other tumour was. On the 9th of June Noah had an eye assessment and we were told that he is most likely blind. They think that he can see light and dark, but he has a more detailed eye test on the 19th July to confirm this. On the 11th June, Noah had his shunt fitted to alleviate some of the pressure off his brain, which he will have for the rest of his life. The next day Noah started to have visible seizures which were lasting up to 5 minutes, they have put him on some medication to try and prevent, if not settle them, and this will be reviewed weekly. We then had a long talk with Noah’s oncology team, and they decided that the best course of action would be to start an 18 month long course of chemotherapy to treat his tumours. Although they don’t know 100% what his other tumour is, they think that it is a low grade glioma. They can’t byopsy this tumour because it’s too invasive and could damage his brain further and he could bleed out. Noah then had a Hickman line fitted on the 20th June to be able to start his chemotherapy. Noah had his first dose of chemo on the 21st of June which went well and we were discharged the following day. However after only a week of having his Hickman line it has stopped working, so we are now back in hospital having a new one fitted. Noah will always have his brain tumours as they can’t be removed and the chemotherapy won’t shrink them. The hope is that the chemo will keep them stable and prevent them from getting worse. Unfortunately, Noah’s team of doctors can’t tell us how long he will live for, but we are very hopeful that the chemotherapy will prevent his tumours from growing and prolong his life as long as possible. They also can’t tell us whether or not he will walk or talk or be like a ‘normal’ child. They have told us to prepare ourselves that he may not do all of those things because of the brain damage he has caused by the tumours. As you can imagine this has been an extremely hard time for us as a family and this is going to be ongoing with noah being in and out of hospital for his whole life. There is a lot of questions that can’t be answered and many unknowns, however we have to take each day as it comes and not look to far ahead. Any funds donated will be going towards anything Noah may need to aid his treatment, travel expenses and covering basic needs. We love you Noah, our little fighter