Sophie Roberts' Story

November 2009

25th: Sophie was born at 17:12 on November 2009 15 days late.

November 2010 – March 2011

Sophie suffered various chest infections with heavy breathing.

April 2011

14th: We find out the wonderful news that Sophie will be gaining a sibling in November.

19th: A visit to the GP to check Sophie’s prominent tummy and heavy breathing.

June 2011

8th: A second visit to the GP to check Sophie’s tummy as a hard ridge could now be felt. This resulted in a referral to a paediatrician.

16th: An appointment with the paediatrician who thought that Sophie might have a tumour in either her liver or kidney.

17th: CT scans and x-rays show likely Stage IV Hepatoblastoma with Lung Metastases

18th: Sophie was admitted to Kings College London for a biopsy on her liver.

20th: A liver biopsy confirms that Sophie has stage IV Hepatoblastoma. Her AFP at diagnosis was 404,280.

22nd: Sophie had surgery for to be fitted with a Hickman Line

23rd: Our first visit to The Royal Marsden to meet Sophie’s consultant and discuss treatment options.

25th: Sophie stayed overnight at our local hospital for a raised temperature and for a blood transfusion.

27th: We hear the wonderful news that Sophie will have a little brother in November. The due date is very close to her birthday and to the likely date she’d have liver surgery to remove the primary tumour.

28th – 30th: Sophie had the first week of the first cycle of chemotherapy at The Royal Marsden. She had 24 hours of Cisplatin with 48 hours of fluid. Sophie’s AFP was 263,095 as of 30th June.

July 2011

5th – 7th: Sophie had her second week of the first chemotherapy cycle. She had 24 hours of Cisplatin with 48 hours of fluid and 48 hours of doxorubicin. Sophie’s AFP was 138,339 as of 7th July.

12th – 15th: Sophie had the third week of the first chemotherapy cycle. She had 24 hours of Cisplatin with 48 hours of fluid. Sophie was fitted with her first nasal gastric tube for feeding. Sophie’s AFP on 15th July was 103,240.

16th to 19th: Sophie was admitted to our local hospital with an infection.

25th: Sophie had a chest x-ray and abdominal ultrasound which showed that she was responding well to the treatment.

August 2011

3rd – 5th: Sophie started the first week of her second cycle and had 24 hours of Cisplatin with 48 hours of fluid. Sophie’s AFP on 4th August was 5,960.

10th – 12th:Sophie had the second week of her second cycle and received 24 hours of Cisplatin with 48 hours of fluid and 48 hours of Doxorubicin. Sophie’s AFP on 11th August was 2,462.

17th- 19th: Sophie started the third week of her second cycle and received 24 hours of Cisplatin with 48 hours of fluid. Sophie’s AFP was 1,269 as of 18th August.

21st to 26th: Sophie was admitted our local hospital with an infection that turned out to be a Hickman line infection.

31st: Sophie had a CT scan which again showed she was responding well to the treatment and that both the liver and lung tumours were shrinking well.

September 2011

8th: Sophie’s AFP was 308

16th: Sophie’s neutrophils were slow to come back up after the chemotherapy and so GCSF was started.

21st: Sophie’s AFP was 251

23rd – 25th: Sophie had the first week of her third cycle. She had 24 hours of Cisplatin with 48 hours of fluid. Sophie’s AFP on 24th September was 356.

30th September – 2nd October: Sophie had the second week of her third cycle. She had 24 hours of Cisplatin with 48 hours of fluid and 24 hours of Doxorubicin. Sophie’s AFP on 30th was 438.

October 2011

8th to 10th: Admitted to Frimley Park for neutropenia

7th: Sophie’s AFP was 225.

12th: Sophie’s AFP was 185

19th: Sophie had a CT scan which showed that the liver tumour was rescectable. Her AFP dropped to 171.

27th: Sophie’s AFP rose to 324.

November 2011

3rd: Sophie’s AFP was 641

14th: Sophie was admitted to Kings College Hospital for her liver resection.

16th: The liver resection was carried out and 25% of Sophie’s liver was removed

16th – 18th: Sophie was in intensive care

23rd: Discharged from Kings College Hospital afterthe successful resection

25th: Sophie’s brother James is born at 23:35, on the exact same day as Sophie

December 2011

5th – 7th: Sophie had her first round of the forth chemotherapy cycle. Sophie received 48 hours of Doxorubicin and Carboplatin. Sophie’s AFP on 5th December was 74.

14th: Sophie had a CT scan which showed that the lung metastasis had grown since her last CT scan. This raised concerns that the tumours had evolved into a hepatocarinoma cell which is resistant to chemotherapy.

22nd to 24th: Sophie was admitted to Frimley Park with neutropenia

30th December – 1st January: Sophie had her fifth round of chemotherapy which consisted of 48 hours of Doxorubicin and Carboplatin.

January 2012

3rd : Sophie’s AFP was 9

10th to 16th : Sophie had an aggressive Hickman Line infection and underwent an emergency operation to have the line removed on 13th January. She had to remain in Fimley Park for antibiotics.

17th: Sophie had an operation for a new Hickman Line to be inserted.

18th: Sophie had a CT scan which showed that she had continued to respond to chemotherapy.

18th to 20th: Sophie was admitted to Frimley Park with neutropenia.

27th – 29th: Sophie had her sixth round of chemotherapy. She received 48 hours of Doxorubicin and Carboplatin.

February 2012

24th – 26th: Sophie had her seventh round of chemotherapy. She received 48 hours of Doxorubicin and Carboplatin.

March 2012

6th to 8th: Sophie was admitted to Frimley Park with neutropenia

14th: Sophie had a CT scan

15th : We received the news that Sophie was in remission!!

19th: AFP is 2

April 2012

16th: Sophie’s AFP rose to 30

23rd: Sophie’s AFP rose to 65

30th: Sophie’s AFP rose to 119

May 2012

3rd : CT scan at Frimley Park shows regrowth of lung metastases

7th: Sophie’s AFP rose to 210

8th: A visit to The Royal Marsden to discuss treatment options

9th : Day one of eighth round of chemotherapy. Sophie received Vincristine and Iritinecan.

10th – 13th: Days two – five of eigth cycle, Sophie recevied Irinitecan.

14th: Sophie’s AFP down to 170

16th: Day eight of eighth cycle. Sophie received Vincrinstine.

21st: AFP down to 70

28th: AFP down to 36

31st : Day one of the ninth cycle of chemotherapy. Sophie received Iritinecan and Vincristine.

June 2012

1st: 4th: Days two to five on ninth cycle. Sophie received Iritinecan.

4th: Sophie’s AFP down to 35

6th – 10th: Sophie was in Fimley Park with an infection.

10th: Sophie’s AFP down to 20

11th: Delayed day eight of the ninth cycle. Sophie received Vincristine.

17th: Sophie’s AFP down to 16

21st: Sophie has a CT scan at Frimley Park Hospital

25th: The results of Sophie’s CT scan look good as the tumours continue to recede. Her AFP is down to 14.

July 2012

1st: Sophie’s Haemoglobin and Platelets are very low (7.1 and 18) so blood tranfusions tomorrow.

2nd: Haemoglobin and Platelet transfusions at Frimley Park Hospital. AFP down to 10.

9th: AFP is 11.

10th: Sophie’s case and latest CT scans are reviewed at Sloan-Kettering.

13th: After reviewing her case, Sophie’s surgeon in the US decides to re-plan the surgery and move the date back two weeks to August 9th.

16th: Sophie starts her 11th cycle of chemotherapy so there isn’t a long gap before surgery. AFP is now 12.

23rd: Sophie has the 8th and last day of her 11th cycle of chemotherapy and her AFP is down to 10. Her temperature spikes late afternoon so she is admitted to Frimley Park hospital with a suspected infection.

31st: Sophie’s blood counts are improving and her AFP is down to 9.

August 2012

5th: Sophie arrives in New York.

7th: Sophie has a CT scan and examinations at Sloan-Kettering.

8th: Sophie meets the surgeon and it’s decided to operate in two parts; left lung 9th and right lung 20th. Sophie’s AFP is 9.6.

9th: Sophie has a thoracotamy with wedge resections on her left lung, with two tumours removed. Sophie enters the Paediatric Observation Unit (P.O.U.).

10th: Sophie spends a little bit of time on her feet and has her catheter and chest drain removed.

12th: Sophie’s temperature has been spiking mildly from time to time, and she’s constipated but, overall doing well and moved to the regular ward.

13th: Sophie is discharged in the afternoon after managing to poo!

16th: Sophie has a check-up with the Dr and everything is going well.

20th: Sophie has a thoracotamy with wedge resections on her right lung, with four tumours removed, including some not visible on the scan. Sophie enters the Paediatric Observation Unit (P.O.U.).

22nd: Sophie is moved to the regular ward.

23rd: Sophie is discharged.

24th: Sophie has a check-up with the Dr and is doing OK. AFP is up to 24 from two and a half weeks ago.

27th: Sophie has a final check-up with the Dr before being cleared to fly home. Her AFP is down to 16.

31st: Sophie’s AFP is down to 8 – lower than before she had surgery!

September 2012

3rd: Sophie starts her 12th round of chemo and her AFP is down to 7

7th: Sophie’s AFP is down to 6.

10th: Sophie finishes her 12th round of chemo.

14th: Sophie’s AFP is down to 5.

21st: Sophie’s AFP is down to 2.

24th: Sophie starts her 13th round of chemo.

28th: Sophie’s AFP is 3.

October 2012

1st: Sophie finishes her 13th round of chemo.

3rd: Sophie has a CT scan and it comes back clear, showing no tumours.

5th: Sophie’s AFP is 4.

12th: Sophie’s AFP is down to 3.

15th: Sophie starts her 14th round of chemo.

19th: Sophie’s AFP is down to 2!

23rd: Sophie finishes her 14th round of chemo.

26th: Sophie’s AFP is 4.

November 2012

2nd: Sophie’s AFP is 3.

5th: Sophie starts her 15th round of chemo.

9th: Sophie’s AFP is down to 2.

13th: Sophie finishes her 15th round of chemo.

16th: Sophie’s AFP is 4

23rd: Sophie’s AFP is down to 2!

26th: Sophie starts her 16th round of chemo.

29th: Sophie’s AFP is down to 1!

December 2012

4th: Sophie finishes her 16th round of chemo.

7th: Sophie’s AFP spikes to 12 – very unusual

8th: Sophie’s AFP continues to rise to 15 – we hope this is linked to her having a very bad stomach

14th: Sophie’s AFP is down to 8 – thankfully it looks like it was due to her stomach

17th: Sophie starts her 17th round of chemo.

20th: Sophie’s AFP is down to 3 – definitely a false alarm, phew!

27th: Sophie’s AFP is 3 and she finishes her 17th round of chemo

January 2013

3rd: Sophie’s AFP rises to 6

7th: Sophie starts her 18th round of chemo

10th: Sophie’s AFP is back down to 3

16th: Sophie finishes her 18th round of chemo and has a CT scan

17th: Sophie’s AFP is 3

18th: Sophie’s CT scan comes back clear

21st: We meet with Sophie’s Oncologist and agree that she should be taken off treatment

22nd: Sophie’s AFP is 8

28th: Sophie’s AFP is back down to 4

February 2013

4th: Sophie’s AFP is 3

11th: Sophie’s AFP is 2

18th: Sophie’s AFP is <2

25th: Sophie’s AFP is 4

March 2013

4th: Sophie’s AFP is 4

11th: Sophie’s AFP is 4

18th: Sophie’s AFP is 2

25th: Sophie’s AFP is <2 but she goes into Frimley Park with a line infection

26th: Sophie is discharged from Frimley Park

31st: Sophie finishes antibiotics as the infection clears

April 2013

8th: Sophie’s AFP is <2

22nd: Sophie’s AFP is 2

May 2013

7th: Sophie’s AFP is <2

13th: Sophie’s AFP is <2

14th: Sophie’s Hickman Line is removed

June 2013

7th: Sophie’s AFP is 2

July 2013

4th: Sophie’s AFP is <2

August 2013

1st: Sophie’s AFP is <1!

30th: Sophie’s AFP is <2

September 2013

24th: Sophie’s AFP <2

October 2013

22nd: Sophie’s AFP <2

November 2013

22nd: Sophie’s AFP <2

December 2013

23rd: Sophie’s AFP <2

January 2014

24th: Sophie’s AFP <2

March 2014

7th: Sophie’s AFP is 2

April 2014

4th: Sophie’s AFP is 2

25th: Sophie is unwell with headaches and spends the night being sick – migrane-like symptoms

26th: Sophie is admitted to Frimley Park, has blood tests and is put on fluids – infection is detected so she starts anti-biotics

27th: Sophie’s AFP comes back as <2

27th: Sophie is discharged but has to return to hospital for the next two days for anti-biotics

29th: Sophie’s blood tests come back clear so she stops anti-biotics

May 2014

23rd: Sophie’s AFP <2

June 2014

20th: Sophie’s AFP <2

July 2014

25th: Sophie’s AFP <2

August 2014

15th-18th: Sophie has chicken pox

29th: Sophie’s AFP < 2

September 2014

26th: Sophie’s AFP < 2

October 2014

31st: Sophie’s AFP < 2

November 2014

28th: Sophie’s AFP is 2

December 2014

15th: Sophie’s AFP is 2

January 2015

14th: We meet with Sophie’s oncologist as it’s been two years since she has been in remission. She gets the all clear! This is a major milestone as the probability of it re-occurring drops significantly from this point.

February 2015

20th: Sophie’s AFP is < 2

April 2015

16th: Sophie’s AFP is <2

July 2015

7th: Sophie’s AFP is <2

October 2015

8th: Sophie’s AFP is <2

January 2016

18th: Sophie’s AFP <2

April 2016

1st: Sophie’s AFP <2