On the 13th march 2023 we couldn’t get a gp appointment Gracie was off her food a little sicky and lithargic I thought nothing more than a virus that was going around at the time. We took her to our local out of hours 111 at Russell’s ball hospital after waiting 12 hours for a doctor who said she was very dehydrated and tested for sepsis finally admitted us for what they thought was a water infection, 48 hours later we were sent home with antibiotics and to continue then at home for a week. 17th march Gracie woke up screaming in pain I knew there was something else going on with her so again we took her back to the walk in centre at Russell’s hall hospital where they were going to send us home with laxatives, I demanded a scan they finally did an X-ray and ultrasound, the sonographer didn’t even speak to me he ran out of that room and got straight on the phone myself and Gracie walked back into children’s ward at Russell’s hall where a nurse came to find me and told me the doctor needed to speak to me, the nurse held me straight away and I knew it was bad, the doctor told me on my own that our baby had a very large mass on her liver at around 7cm and we needed to be transferred to a specialist hospital as soon as we could. That same night we were blue lighted to Birmingham childrens hospital. Over the next 48hours Gracie had blood taken every hour, antibiotics running constantly she was so lithargic now prior to this Gracie had no symptoms really only that mimicked a normal child virus, no lump, no swelling. She then had her first biopsy and her central line inserted ready for what ever treatment was needed, a week later we were told the biopsy was not sufficient enough and they needed another so again they went in but this time deeper. The next day Gracie’s health deteriorated rapidly her consultant thought she was bleeding internally her stomach was very very large and swollen and red hot to touch we were sent down immediately for a ultrasound which to our horror we weee told the tumour had gone from 7x7cm to 15x10cm in a week. The plan was Changed and Gracie needed to start chemotherapy straight away so two days later we were finally transferred to ward 18 waterfall house ( the cancer ward) that week Gracie’s health “took a nose dive” as the doctors said her heart rate was over 180 her blood pressure ridiculously high her breathing was laboured this was finally explained to me that the tumour was making the hormones as it sits on the adrenal gland and was squashing her kidneys. Finally after what seemed a long time after 4 ultrasounds 2 mris 2 ct scans 2 biopsies we were told Gracie had stage 4 high grade MYCN amplification NEUROBLASTOMA that has spread to her bone marrow and on her back and well as her primary large tumour on the right side of her abdomen. She will endure gruelling 8 round of chemotherapy, surgery, radiotherapy, stem cell transplant and immunotherapy. Because of the mycn gene she has this makes her cancer more aggressive and after going through all the treatment it is likely to relapse, so we need to get her to New York after her RAPID COJEC treatment here for a antibody therapy treatment called BIVALENT VACCINE at the memorial Sloan Kettering cancer centre in New York, the treatment targets the two proteins found on neuroblastoma cells GD2l & GD3l, this is the only Paediatric tumour vaccine in existence. The strength and bravery our little 2 year old is showing is nothing short of amazing she is incredible, she recently had a feeding tube put in as she lost a lot of weight, we are about to start our 4th round of chemo. We need to save our baby not much is known about this cancer and i for one want to raise awareness, who knows if those two weeks we were misdiagnosed would have helped but a single urine sample could have helped Gracie get the specialist care she needed. Gracie continues to be her cheeky smiley self with her little sassy ways. Thank you for taking your time to read Gracie’s story