Sarah's Cancer Fund
Donation protected
*** Please see latest updates at bottom ***
Hello, my name is Marius, I am Sarah's husband, and we have been together since 1997. We have two beautiful young daughters, 12 years old and 14 years old.
Sarah was diagnosed with Lymphoma in May 2022 after it was missed twice in March 2022, which meant that by the time she was diagnosed, the cancer had already progressed to a very advanced stage (stage 4b), and she was in a very worrying condition.
Due to the lateness of the diagnosis and the aggressiveness of the cancer, the only option available was to put her on a very intensive chemotherapy regime called R-CODOX-M and R-IVAC which could only be administered as an in-patient. Sarah bravely endured this brutal regime for 4 months away from her family and mostly alone in hospital.
Unfortunately, we were told that despite this intensive treatment, it has not been successful, and her tumours have started growing again. She was not able to go in to any remission. As a result of this very worrying result, she has now begun salvage chemotherapy, but the resistance the tumours have developed is proving of great concern.
Having researched the available treatment options that Sarah has on the NHS, it has become apparent that we will probably have to seek out treatment abroad to increase Sarah's chances. The most promising treatment is a clinical trial run by Washington University in the USA:
There are no similar clinical trials of this specific treatment combination run anywhere else in the world. Also, some treatments are just not available on the NHS at all.
I have made a number of enquiries to various institutions, including Washington University in the USA, BioNTech in Germany, and Emergency Medical Access Japan, and we will go with the most promising option available. Our biggest hope is that Sarah will be accepted on the clinical trial run by Washington University in the USA. However, we will be looking at all options, trials, etc.
I have no other choice than to take matters in to my own hands as my daughters and I are desperate, and we cannot bear to lose Sarah.
The fundraising target is based on research I have done for cost of hospital stays in the USA, which averages around $3,000 per day. Based on Sarah's past treatment and estimating how long she may need to stay in hospital, the fundraising target is based on 3 months stay.
*** UPDATE: 20th October 2022 ***
This morning I received an email from the lead running the clinical trial at Washingon University in the USA. Her reply was "Your wife would not be eligible for this trial, unfortunately. It is only for patients who have insurance coverage in the US to receive Kymriah".
I have also had a response from BioNTech in Germany who said "Unfortunately, we have to inform you that BioNTech is currently not conducting any clinical trials in the indication of Non Hodgkin Lymphoma. At this stage we cannot provide any information about the potential expansion of the study program".
Emergency Medical Access Japan have also responded "Although the covid related ban has been lifted ... not many Japanese hospitals are fully ready to accept patients from overseas yet". When I asked for a list of any hospitals that could accept overseas patients, they replied "No examinations, treatments in Japan ... as for the NK-cell therapy, we cannot assist you any further. We hope you understand this".
These were the most promising lines of enquiry. As a result it looks like we will have to go ahead with standard CAR-T cell therapy on the NHS. I am still looking at clinical trials but I have not found anything as promising as the options above as yet.
Even if we do go ahead with the standard CAR-T cell therapy on the NHS, it likely that Sarah may not be treated by a local centre. It is a requirement that a patient lives under an hour from where they have received their treatment for a minimum of 28 days after their treatment so if Sarah will be going further afield, she will need to have local accommodation near that centre.
Can I just say that we cannot express our gratitude enough for your kindness and generosity. We really are completely humbled by you all. At the same time, the scope of this fundraiser has now changed from the position we were in when I first created it and I doubt this will be the last time that things will change. None of us has a crystal ball, unfortunately.
Whilst I am gutted that Sarah was not accepted on the Washington University trial, the money raised may still prove useful to help with accommodation costs and living expenses in the event she has to stay away from home.
But this brings me to a very important point. If you feel that the current circumstances, or any future circumstances, no longer reflect what you had hoped from your donation, please do not hesitate to let me know so I can refund you. I wouldn't want anyone to feel that they have been misled in any way. Please also do let me know if you have any other questions or concerns.
Thank you once again for your support in these most challenging of times and please keep a lookout for updates. I will post as and when there is anything to report. In the meantime, please keep Sarah in your thoughts, she needs all the luck in the world.
To keep up with her journey, please see her profile on Instagram at @sarahandthegrapefruit, or at the following link:
*** UPDATE: 10th March 2023 ***
Sarah went into hospital at Birmingham Queen Elizabeth hospital on the 23rd of December 2022 and had her CAR-T treatment on the 29th of December 2022. She missed Christmas and New Year with her family and had to go through even more tough side effects of this treatment. This was in addition to the severe pains she had to endure before the CAR-T treatment as a result of the tumours growing again after the initial and then salvage chemotherapy failed.
Sarah had to then spend 28 days (most of January 2023) in isolation in accommodation next to the hospital without being able to see her family. Her 30 day PET-CT scan (which shows tumours and how active they are) post CAR-T disappointingly only showed a Partial Response. We were hopeful that the CAR-T would improve in its effectiveness but by her 60 day PET-CT scan the tumours had returned and had started growing plus they had also spread to her chest.
Shortly after this scan Sarah started having increasing pains at all tumour sites and was not able to eat due to the growth of the mass in her abdomen. At her weekly clinic appointment in Birmingham two days ago, her consultant decided to keep Sarah in hospital to try and give her some urgent emergency chemotherapy treatment.
At this moment in time we are waiting on an unapproved drug which is two to three weeks away and we are now effectively in a race against time with the tumours. So as always, please keep Sarah in your prayers, she needs all the luck in the world to be one of the lucky ones. Thank you all from the bottom of our hearts.
*** UPDATE: 19th May 2023 ***
Sarah started the unapproved drug (Glofitamab) in early April 2023 and initially things looked fairly promising, however we were given the devastating news two days ago that it had not worked and her cancer had grown and spread further. As we have exhausted all treatment possibilities, this is now terminal and unfortunately, Sarah has only been given a few weeks. This was still quite a shock to us as we had thought that things were looking promising. We are now desperate to buy Sarah enough time to be here for our eldest daughter's birthday at the end of July. As we have used up all treatment options we will have to pay for the treatment that seems to have worked the best, this is a type of chemotherapy called Pola-BR, we have been informed that this will be approximately £66,000. I have adjusted the goal to reflect this and really hope that we will be able to give Sarah's wish to be here for our daughter's birthday. Thank you all once again from the bottom of our hearts.
*** UPDATE: 31st May 2023 ***
Yesterday we received the only proper quotation to treat Sarah with Pola-BR from Nuffield Health. The total comes to £145,000 so I have adjusted the target to reflect this. Please also note that The Mirror has posted an article about Sarah's plight and they incorrectly stated that we initially raised £200,000. I have asked for this to be corrected as all we have raised in total is what is on this GoFundMe page. An article was also published by Derbyshire Live which was the only organisation we talked to but it looks like this was then picked up by other publications, including The Mirror. I don't mind this as the wider Sarah's story can be broadcast, the higher the chance we can reach the target. Could I just take the chance to thank everyone again who has been able to donate, we are deeply grateful to you.
*** UPDATE: 1st September 2023 ***
As some of you will already be aware, it is with great sadness that I have to inform you that Sarah passed away on the 7th of July 2023. I have only managed to post this update now as its taken me a while to come to terms with this as we never gave up hope right until the end. I have updated Sarah's photo to remember her as she was rather than the photo when she was suffering due to her condition and her treatment. Obviously please do not make any further donations and the money already raised has been used in accordance with Sarah's wishes and any money left over will be donated equally between Treetops Hospice and Macmillan Cancer Support. Could I just take the chance to thank you all again from the bottom of my heart for your invaluable support, I really cannot express just how grateful I am to each and every one of you. Best wishes to you all, Marius.
Organizer
Marius Grigoriu
Organizer
England