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Lyndsay's chance of survival

Our Daughter/Sister Lyndsay is in desperate need of life saving specialist treatment that is only available at the MD Anderson cancer centre based in Texas. This hospital has seen and treated patients with her type of cancer, SMARCA4 deficient thoracic Sarcoma, which is a very rare soft tissue sarcoma. The UK have not seen this cancer before so there is no research or funding for this type of cancer here.

We are seeking help to raise funds for an initial assessment by MD Anderson cancer centre. The initial assessment includes a full review of Lyndsay's diagnosis which includes evaluation of pathology, surgical, laboratory, & radiology reports. Lyndsay's recent medical & treatment summary will be reviewed which will enable the specialists to request pathology material for analysis. Following review and evaluation a treatment plan will be recommended.

In the UK Lyndsay can only be offered, and is currently taking, palliative chemotherapy and immunotherapy in the hope this will slow down the aggressive cancer to possibly give Lyndsay more time with her husband and four children.

Lyndsay's Sarcoma was diagnosed at the end of July this year after having two surgeries on what the consultant had misdiagnosed as a haematoma. Surgery is known to aggravate and rapidly increase the growth of this type of rare cancer. 

A detailed account of Lyndsay's traumatic year can be read below.


We are desperately asking the world for help because time is not on Lyndsay's side, if she does not respond to the immunotherapy Lyndsay only has a few months to live. If she responds she can have palliative care for up to two years only. 

Lyndsay is a mum to four beautiful children the eldest being Daniel who is 16 followed by West then Sommer who is 15 and the youngest Dakota who is 10. She is a loving wife to her amazing husband Nicholas.

Lyndsay works in the travel industry & volunteers as a cub scout leader. She loves spending time with her family and friends. Lyndsay has always been energetic, happy and has a positive can-do attitude. Lyndsay loves to be outdoors hiking, camping, exploring different places & she thoroughly enjoys baking. 

We know we are asking for such a large amount and after all that has happened to Lyndsay this year you are our only hope. If everyone can find the kindness in their hearts to donate towards Lyndsay and her family's future, no matter what the amount we would be forever grateful. We understand that these are difficult times for many and if you are unable to donate to Lyndsay's cause then please please please share our cause and help us get Lyndsay to America for the lifesaving treatment she so desperately needs. 

Our family will be posting regular updates about Lyndsay and the treatment/care she is receiving due to your generosity. We would like to thank you in advance for taking the time to read Lyndsay's cause.


Lyndsay's story

Lyndsay was admitted to hospital with a Pneumothorax in January of this year, she was fitted with a chest drain whilst remaining in hospital where she caught hospital acquired pneumonia and was scheduled to have an operation a week later, it was cancelled and she was sent home from hospital including chest drain.  Surgery was rescheduled for 10 days time but unfortunately whilst at home she was rushed to hospital with an expanded Pneumothorax. There was no surgeon available and Lyndsay had to stay in hospital for a further 2 weeks until emergency surgery was performed due to an emergency doctor insisting he won’t have her stay like this any longer.

Lyndsay started to recover well for the first few months but by May, through talk with other patients and advice from her follow up appointment, she realised she was deteriorating. In June Lyndsay went to hospital due to pressure on her throat and, blood presenting when she coughed, & shortness of breath too. A chest X-ray was taken and a mass was found in her chest cavity. Lyndsay then had a CT scan which the consultant decided that it showed a Haematoma (a solid swelling of clotted blood within the tissues) and surgery was given to remove this and again she was fitted with a chest drain. A biopsy was meant to of been taken but wasn’t.

Three days later Lyndsay went home from hospital feeling a relief of pressure on her throat with a chest drain fitted but had to return to hospital the next day because she was feeling heavy pressure on the throat once again and was still coughing blood. Lyndsay was advised she was being paranoid and it was only a Haematoma and was sent home. Over the next two days Lyndsay deteriorated and was worried about going straight to the hospital after what they had already advised so rang her GP who did advise she must go.  Another X-ray and CT scan showed the mass that had previously been operated on had grown back but double the size.

Lyndsay had another operation to remove what the consultant had again said was a Haematoma. During that operation a lymph node was removed as it was enlarged, she was told that it was probably lymphoma & it had been sent off for biopsy. This time a biopsy was also taken from the Haematoma. Once again Lyndsay felt better and was discharged only to go back into hospital 5 days later with all the same symptoms  as twice previous, Lyndsay was kept in hospital for observations for 10 nights and during this time she was told
she definitely had lymphoma then told 24 hours later she didn’t have lymphoma. Lyndsay then met a ward
Clark who said he was going to help her, he said she was staying in hospital this time and wasn't going anywhere until they have got to the bottom of what was going on knowing she had been through so much. Another CT scan was done and it revealed the mass had once again grown back bigger, pushing her trachea into the right-hand side of her neck, she could no longer talk without coughing.

The consultant started to go through everything dating back to January when this all started up to now
(July). He chased the biopsy results and these confirmed a total shock of soft tissue sarcoma, an extremely rare aggressive cancer which left Lyndsay, her family and friends devastated.

Lyndsay's story details specific events that have taken place during her stays / visits to hospitals. We have
not gone into specific detail in regards to which hospitals however, Lyndsay would like it to be known that
support and actions taken by Colchester hospital have been excellent.



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Organizer and beneficiary

Lisa Webb
Organizer
Nicholas Johnson
Beneficiary

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