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Cure Neuroblastoma Max

Sadie rose Clifford

Monday 11th October 2010
My husband Darren and I had taken a break away for a couple of days and Sadie Rose spent the time with her Granny (Lynne - Darren's Mum). We got a phone call to say that Lynne had taken Sadie to the doctors. The Dr saw her and checked her over, her temp had reached 40 degrees C. Sadie was refusing to eat or drink anything, so the Dr thought it best to ask a paediatrician to take a look at her. So Lynne took Sadie Rose to Harrogate Hospital, where they checked her ears, nose and throat, and they thought she had a throat infection. Lynne was told to give her regular doses of Calpol and Ibuprofen and were sent home.

Tuesday 12th October 2010
Amy (Darren's Sister) and Lynne took Sadie out for the day and by tea time her temp again had risen to 39.5 degrees C, and the Calpol and Ibuprofen weren't controlling her temperature. Lynne decided to rake Sadie back to the hospital, where they checked Sadie over again and decided to increase her dose of Calpol.

Wednesday 13th October 2010
Today me and Darren came home to a very poorly baby. Which was extremely upsetting as she had lost alot of weight and looked really pale.

Monday 18th October 2010
Sadie still wasn't eating or drinking anything although the Dr's didn't think she was dehydrated. I knew something still wasn't right. Our bright, bubbly little girl had become withdrawn, pale and a shadow of her former cheeky self. By tea time I had checked Sadie's temp again so I took her back to the Dr's.......once AGAIN!!!! This time they had told me that they thought she had an ear and throat infection and prescribed her Antibiotics. The doctor had made an appointment for another doctor to see Sadie first thing in the morning for a 2nd opinion.

Tuesday 19th October 2010
After another unsettled night I dropped Sadie off at Lynne's and went to work. At about 10am Lynne came into work with Sadie and told me that the doctor had asked another paediatrician to check Sadie at the hospital again because her heart rate had increased to 230bpm. Lynne and I took Sadie to hospital where yet ANOTHER doctor saw Sadie and decided her thought she had an Upper Respiratory Infection which was viral, and thought it best to stop her Antibiotics.

Saturday 23rd October 2010
Today Sadie slept nearly ALL afternoon which was unlike her as she used to be such a busy little bee.

Sunday 24th October 2010
Today was another normal day, and Darren and I had made a good old Sunday Roast and Sadie was having a pretty good day. She seemed pretty tired, looked pale and alot thinner than usual. After refusing her tea Darren checked her temp again, and as we had open access to Harrogate Hospital we thought we would make the most of that and take her up again. This time Darren demanded that blood tests were taken as there was something NOT RIGHT!!!!

A different doctor saw us this time and within 5mins of us being there her temperature rose to 41 degrees C. She was given Calpol immediately and the doctor thoroughly checked Sadie over as they thought her tummy looked very swollen. The doctor seemed worried and thought she could feel her spleen and liver and decided to take the blood samples, and we stayed in overnight.

Monday 25th October 2010
This morning the consultant came in and told us that they had found abnormalities in her blood tests and thought it would be best that he transferred us to Leeds General Infirmary to see a specialist consultant there. We were told we would be admitted onto the Oncology Ward, which at the time neither me or my husband really knew what this meant. We explained to the spe,cialists at the LGI what had been happening with Sadie over the past 3weeks. The specialist consultant came to see us and had a feel of her tummy too. We were scheduled an Ultrasound scan for the next morning.

Wednesday 27th October 2010
This afternoon the Consultant came in to see both me, Darren and my mum (Elaine) and told us that the scan had shown a tumour above her left kidney on her adrenal gland, and that more tests and scans were needed as they suspected that Sadie had Neuroblastoma. A bone scan, bone marrow aspirate and CT scan were all scheduled for the next few days.

Friday 29th October 2010
Today we were told that Sadie's bone marrow test had shown low level disease although her bone scan was clear. This however confirmed the diagnosis of Stage 4 Neuroblastoma. We were told that Sadie was to have a Naso-Gastric tube fitted and a Hickman Line. She would also need to have a biopsy of her tumour.

Friday 5th November 2010
We had a meeting with the Consultant, and Macmillan Nurse. We were told that the biopsy had shown that her tumour was MYC-N amplified. We were originally given a survival chance of 35% however since research trials this chance has increased to 50%. We found out the tumour measured 10.5 x 8.9 x 8.5cm.

First Sadie will get induction Chemotherapy which lasts for 70 days and is given in 10day cycles. Which she is now about to have her 6th cycle on Boxing Day.
Surgery will take place around 80-90 days after the start of Chemotherapy.
Sadie will also have Radiotherapy and High Dose Chemotherapy.

To help Sadie recover from this she will need to have her Stem Cells collected prior to High Dose Chemotherapy. Which will then be given back to her to help her recover her blood counts faster.

The final therapy Sadie will receive is to try get rid of any potential residual disease using a vitamin called Retinoic Acid, and also Antibody Therapy.

Many Thanks for taking time to read our LONG story......
Lots of Love
Katie, Darren & Sadie Rose Clifford

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