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About Kidney Cancer

Here you will find information to help you if you are newly diagnosed,
undergoing or following treatment on a wide range of subject relating to
including Symptoms, treatments, living with kidney cancer and information videos

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If you need support and would like to talk to our Counsellor or Careline, are in
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our wide range of informative exercise, dietary or yoga and more videos, this is the area for you.

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Kidney Cancer Nurses

Research and Training

Here you will find a programme to help you find a clinical trial to suit you, information relating
to research programmes we are funding ad how you can apply for such fund along
with information on our Peer Review process.

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people with, or those effected by, kidney cancer. Here you will find the many ways to
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What's New?

Christmas and New Year Hours 2018

Our office and Careline opening hours for Christmas & New Year 2018
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Patient Survey Results Autumn 2018

Almost half of kidney cancer patients suffer initial misdiagnosis. Read the results from our Patient survey, Autumn 2018.
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Kidney Cancer Counselling Service

Kidney Cancer UK and Kidney Cancer Scotland provide the UK's first, free, dedicated Kidney Cancer Counselling Service.
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Living With Kidney Cancer days

Check the dates for our Living With Kidney Cancer days for 2019.
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Latest News

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  • natalie Newnes Great North Run edit

    Natalie Newnes: Born to Run

    21 Nov 2018

    Natalie Newnes 5

    Following a weight loss plan and giving birth to a lovely baby boy, Natalie Newnes started running marathons. Life could not have been better for Natalie until pains in her side revealed she had kidney cancer. This is Natalie’s story:

    “In January 2012, I joined Slimming World as I needed to lose weight so I could have fertility treatment as my husband Shaun and I were struggling to conceive. Ironically, after a year I lost 4 stone and fell pregnant naturally and In 2014 I gave birth to a gorgeous baby boy we named Oscar.Natalie Newnes

    I made it my mission to become a healthier and fitter mam for Oscar and in January 2016 I decided to follow in my husband’s footsteps and take up running. Before long I was signing up for my first half marathon!

    As the months past and the half-marathon drew closer, I started to suffer with pains in my right side. These felt similar to a stitch and I thought it was associated to running so I put it to the back of my mind and  continued training hard. The day of my race I suffered really bad pains but again I brushed them off. As they continued after the natalie Newnes Great North Run editrun I eventually went to the doctors who referred me for a ultrasound scan. Within a few hours of the Natalie Newnes 6scan my doctor called to say they found a 5cm lump and needed to do a CT scan to investigate further. I had the scan and after having an inconclusive biopsy, the doctors made the decision to remove my right kidney as they said it was very likely it was high grade cancer.

    So, in April 2017 the whole kidney was removed by keyhole surgery (a laparoscopic nephrectomy). Thankfully it was low grade cancer and no further treatment was needed. After having the all clear to run again, I decided to enter the Great North Run ballot and was surprised when I actually secured a place! I trained hard but healing from my surgery slowed things down. I received another blow three-weeks before my race I was told I have stage 3 chronic kidney disease in my remaining kidney. I knew after everything that I had been through, this news wasn’t going to stop me or keep me from doing what I’ve always dreamed of doing. So, on 9th natalie Newnes Great North Run 2 editSeptember 2018 I completed the Great North Run in a great time of 3 hours 20 minutes! It was such an emotional day, an amazing experience and I am finally proud of myself for completing it after what I’ve gone through and happy to say, I’m also 13 stone lighter.Natalie Newnes Great North Run 3 edit

    I have had amazing support from family, friends and work colleagues who have all sponsored me, raising a fantastic amount of money for Kidney Cancer UK, an amazing charity. £610 raised.”

    You can still support Natalie’s fundraising by visiting her Just Giving page HERE

  • kidney cancer

    CHMP adopts a positive opinion of nivolumab + ipilimumab as 1st line treatment

    16 Nov 2018

    Press release: Bristol-Myers Squibb Receives Positive CHMP Opinion Recommending Approval of Opdivo® (nivolumab) Plus Low-Dose Yervoy® (ipilimumab) as First-Line Treatment for Patients with Intermediate- and Poor-Risk Advanced Renal Cell Carcinoma

    PRINCETON, N.J.–(BUSINESS WIRE)–Bristol-Myers Squibb Company (NYSE: BMY) today announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency adopted a positive opinion recommending approval of the Opdivo (nivolumab) plus low-dose Yervoy (ipilimumab) combination to include first-line treatment for patients with intermediate- and poor-risk advanced renal cell carcinoma (RCC). This recommendation will now be reviewed by the European Commission (EC), which has the authority to approve medicines for the European Union (EU).

    “There remains a high unmet medical need for patients with advanced renal cell carcinoma,” said Arvin Yang, M.D., Ph.D., development lead, melanoma and genitourinary cancers, Bristol-Myers Squibb. “We are encouraged by today’s positive opinion from the CHMP and look forward to potentially bringing the first Immuno-Oncology combination therapy to appropriate RCC patients across the EU.”

    The CHMP recommendation is based on positive data from the Phase 3 CheckMate -214 clinical trial, which was stopped early following a planned interim analysis that showed the combination of Opdivo 3 mg/kg plus Yervoy 1 mg/kg demonstrated a significant increase in overall survival (OS) with a 37% decreased risk of death in intermediate- and poor-risk patients, regardless of PD-L1 expression level, compared to a current standard of care, sunitinib (Hazard Ratio [HR] 0.63; 99.8% Confidence Interval [CI]: 0.44 to 0.89; p<0.0001). Median OS in patients treated with Opdivo plus low-dose Yervoy was not yet reached (95% CI: 28.2 to not estimable [NE]), compared to 25.9 months for patients treated with sunitinib. Opdivo plus low-dose Yervoy also delivered durable responses with a higher objective response rate of 41.6% (95% CI: 36.9 to 46.5; p<0.0001; n=177/425) versus 26.5% for sunitinib (95% CI: 22.4 to 31.0; n=112/422). Median duration of response (durability) for Opdivo plus low-dose Yervoy was not yet reached (95% CI: 21.8 to NE) among responded patients, compared to 18.2 months for sunitinib (95% CI: 14.8 to NE). The overall safety profile was consistent with prior studies of Opdivo in combination with low-dose Yervoy.

    The results of the CheckMate -214 study were first presented at the European Society for Medical Oncology (ESMO) 2017 Congress and were published in the New England Journal of Medicine in March 2018.

    About CheckMate -214

    CheckMate -214 is a Phase 3, randomized, open-label study evaluating the combination of Opdivo 3 mg/kg plus Yervoy 1 mg/kg versus sunitinib in patients with previously untreated advanced renal cell carcinoma (RCC). In the intermediate- and poor-risk study population, 425 patients received Opdivo 3 mg/kg plus Yervoy 1 mg/kg every three weeks for four doses, followed by Opdivo 3 mg/kg every two weeks, and 422 patients received sunitinib 50 mg once daily for four weeks, followed by two weeks off every cycle. The recommended dosing for the Opdivo plus low-dose Yervoy combination is Opdivo 3 mg/kg followed by Yervoy 1 mg/kg each infused intravenously over 30 minutes on the same day every three weeks for four doses. After completing four doses of the combination, Opdivo should be administered intravenously 240 mg every two weeks over 30 minutes or 480 mg every four weeks over 60 minutes until disease progression or unacceptable toxicity.

    The co-primary efficacy outcome measures of the trial were overall survival, objective response rate (Complete Response + Partial Response) and progression-free survival as determined by an independent radiographic review committee (IRRC) in intermediate- and poor-risk patients. Patients were included regardless of their PD-L1 status.

    About Renal Cell Carcinoma

    Renal cell carcinoma (RCC) is the most common type of kidney cancer in adults, accounting for more than 140,000 deaths worldwide each year. Clear-cell RCC is the most prevalent type of RCC and constitutes 80% to 90% of all patients. RCC is approximately twice as common in men as in women, with the highest rates of the disease in North America and Europe. Globally, the five-year survival rate for those diagnosed with metastatic, or advanced, kidney cancer is 12.1%.

    Bristol-Myers Squibb: Advancing Oncology Research

    We are leading the scientific understanding of I-O through our extensive portfolio of investigational compounds and approved agents. Our differentiated clinical development program is studying broad patient populations across more than 50 types of cancers with 24 clinical-stage molecules designed to target different immune system pathways. Our deep expertise and innovative clinical trial designs position us to advance the I-O/I-O, I-O/chemotherapy, I-O/targeted therapies and I-O radiation therapies across multiple tumors and potentially deliver the next wave of therapies with a sense of urgency. We also continue to pioneer research that will help facilitate a deeper understanding of the role of immune biomarkers and how a patient’s tumor biology can be used as a guide for treatment decisions throughout their journey.

    We understand making the promise of I-O a reality for the many patients who may benefit from these therapies requires not only innovation on our part but also close collaboration with leading experts in the field. Our partnerships with academia, government, advocacy and biotech companies support our collective goal of providing new treatment options to advance the standards of clinical practice.

    About Opdivo

    Opdivo is a programmed death-1 (PD-1) immune checkpoint inhibitor that is designed to uniquely harness the body’s own immune system to help restore anti-tumor immune response. By harnessing the body’s own immune system to fight cancer, Opdivo has become an important treatment option across multiple cancers.

    Opdivo’s leading global development program is based on Bristol-Myers Squibb’s scientific expertise in the field of Immuno-Oncology, and includes a broad range of clinical trials across all phases, including Phase 3, in a variety of tumor types. To date, the Opdivo clinical development program has enrolled more than 25,000 patients. The Opdivo trials have contributed to gaining a deeper understanding of the potential role of biomarkers in patient care, particularly regarding how patients may benefit from Opdivo across the continuum of PD-L1 expression.

    In July 2014, Opdivo was the first PD-1 immune checkpoint inhibitor to receive regulatory approval anywhere in the world. Opdivo is currently approved in more than 65 countries, including the United States, the European Union, Japan and China. In October 2015, the Company’s Opdivo and Yervoy combination regimen was the first Immuno-Oncology combination to receive regulatory approval for the treatment of metastatic melanoma and is currently approved in more than 50 countries, including the United States and the European Union.

  • stressed man

    Kidney Cancer patients suffer high levels of stress

    12 Nov 2018

    Distress Levels High Among Patients With Common Form of Kidney Cancer

    Many patients with renal cell carcinoma, the most common type of kidney cancer, experience high levels of distress, according to study findings published in BJU International.

    Researchers from City of Hope in Duarte, California, surveyed 450 people online about age, gender, histologic subtype and disease recurrence. Most patients where white (93 percent) and more than half were women (56 percent), at a mean age of 56 years. Seventy-four percent of patients had non-metastatic disease and 61 percent had disease recurrence.

    “We observed that more than 70 percent of patients report moderate to severe distress, even if these patients have completed treatment and are in the survivorship period of their lives,” Cristiane Decat Bergerot, Ph.D., a postdoctoral fellow, said in an interview with CURE.

    Distress was measured by using the National Comprehensive Cancer Network (NCCN) Distress Thermometer, which ranks the feeling from zero (no distress) to 10 (extreme distress). Patients with renal cell carcinoma had the chance to complete the survey from April 1, 2017 to June 15, 2017.

    Moderate to severe distress was reported by 77 percent of patients, and it was more common in younger women who had non-clear cell histology — which accounts for about 20 to 25 percent of all renal cell carcinoma cases —and disease recurrence. However, race, metastatic disease and removal of one or both kidneys had no association with greater distress.

    “Non-clear cell histology is not a common type of renal cell carcinoma, so (these patients) have less information to access online about their treatment,” Decat Bergerot said. “Usually, when our patients finish their treatment, they have more fear of cancer progression and fear of recurrence. It is something that we can work with them to mitigate these kinds of symptoms and go back to enjoying their lives.”

    In addition, researchers noted that distress is more prevalent in patients with renal cell carcinoma than in other cancer types, which they attributed to specific subsets of patients. “For instance, patients with recurrence demonstrated high levels of distress, and understandably so, as these populations face a poorer prognosis,” researchers wrote.

    Decat Bergerot explained that interventions are needed to target this population of patients to help lower levels of distress and anxiety. “We can keep screening these patients for emotional problems and try to refer them for early interventions with psychologists or social workers, or we can even make more affordable programs,” she said. “As soon as they feel like this is disrupting activities, their social life and behaviors, they should report this to their nurse or social worker.”

    READ THE FULL ARTICLE HERE

    If you are feeling distressed or stressed and need support please consider our free counselling service or our free to call Careline – CLICK HERE for more information.

  • survey results page banner

    Patient Survey Results Autumn 2018

    29 Oct 2018

    Almost half of kidney cancer patients suffer initial misdiagnosis

    Kidney Cancer UK calls for government to support national kidney cancer screening programme.

    Kidney Cancer UK, the UK’s leading kidney cancer charity, has highlighted worrying concerns at the difficulty of identifying the disease as *45% of patients received treatment for unrelated illnesses before kidney cancer was diagnosed. Data from the charity’s latest patient survey released today revealed the most common of these initial misdiagnoses was urine infection, kidney stones and respiratory problems (asthma, cough, short of breath). The importance of swift action when treating any form of cancer is imperative and in many cases a misdiagnosis has proven fatal and as such Kidney Cancer UK is calling for the Government to support their research into a national kidney cancer screening programme.

    Local GP Dr. Juliet Usher-Smith said; “The finding that, of those surveyed, almost half of patients had no symptoms before diagnosis really shows how difficult it is to diagnose kidney cancer and the urgent need for better ways of identifying this silent killer earlier.”

    The survey, which is the UK’s only kidney cancer focused annual survey, received 270 patient responses, exposing some startling facts: almost half (48%) were diagnosed at the most life-threatening stages, 3 and 4, where the prognosis is much worse. Furthermore, 73% of those surveyed showed no signs of the disease before diagnosis, highlighting the difficulty in recognising and rapidly diagnosing the UK’s seventh most common cancer. The reason is that kidney cancer symptoms are often difficult to detect in its early stages and that the common symptoms can often be misread as other ailments. Patients most commonly present at GP level with fatigue (39%), pains in the back, side & flank (38%) and blood in urine (36%).

    At this year’s Conservative Party Conference, Prime Minister Theresa May announced a new cancer strategy aimed at increasing the number of people whose cancer is diagnosed early from the current figure of 1-in-2 to 3-in-4 people by 2028. She pledged new diagnostic facilities.

    Mr Grant Stewart of the University of Cambridge and Addenbrooke’s Hospital, Cambridge

    Mr Grant Stewart

    Kidney cancer surgeon, Mr Grant Stewart of the University of Cambridge and Addenbrooke’s Hospital, Cambridge said: “These statistics, along with the Prime Minister’s announcement of an earlier diagnosis strategy stand as a stark reminder of the continued elusiveness of diagnosing kidney cancer at an early stage where surgery would be curative. Kidney Cancer UK has an active working party developing a Kidney Cancer Accord which we will present to NICE and the NHS recommending steps towards making improvement in quality of services and consistent pathways for patient treatment.”

    CEO of Kidney Cancer UK, Nick Turkentine

    Nick Turkentine CEO, Kidney Cancer UK

    Chief Executive of Kidney Cancer UK, Nick Turkentine, welcomed this new ambition, but pointed out: “Hi-tech, diagnostic testing is only part of the answer. In the case of kidney cancer, we urgently need clear quality standards and performance indicators to support clinicians to help them identify at-risk patients, until a simple test to detect kidney cancer can be developed. It is important that we as a charity can help GPs identify symptoms of kidney cancer through sustained and penetrative awareness campaigns to both the public and GPs.”

     

    Hollyann Prince was 23 when she first went through a series of misdiagnosis and tragically lost her brave battle in June 2018. As heartbreaking as Hollyann’s story is, her parents selflessly want people to hear what she had to say and have allowed us to use Hollyann’s video to highlight the importance of early diagnosis, and the consequences of it being overlooked, to everyone. In this video, recorded late 2017, she talks honestly and openly about the her tough journey. Hollyann was a wonderful person and is deeply missed by all.

    Words from Hollyann’s blog she wrote for us:

    So, I guess as much as I despise you kidney cancer, I have to thank you for making me live a little more, for making me accept my body more, for giving me that extra boost to spend yet more money on clothes and to make me want to see more of the world. I have to thank you for strengthening certain relationships, for making me realise how little awareness there is around you and for quite frankly, keeping me on my toes. However, in all honesty, kidney cancer you truly suck, and I sincerely hope (like all other cancers) that you sod off and never return.

    Linzi Atkinson, Patient quote:

    I was misdiagnosis in early 2017 even though I presented to my GP with the classic symptom of kidney cancer, blood in my pee. As soon as I notice it I went to the doctor who treated me for a possible urinary infection with little or no further investigation and I was sent home with just antibiotics. I would have thought no more, and the cancer would have continued to grow inside of me, but I continued to see blood and I just didn’t feel right. Many weeks later the kidney cancer was picked up and in 2017 my whole kidney had to be removed along with the tumour. The importance of a national kidney cancer screening programme is vital to tackling this silent killer and it can be picked up by a simple ultrasound scan. Also, raising awareness to the medical profession so as when a patient tells their doctor they have blood in their pee one the first thing that should be check for every time is kidney cancer. Although I had a very tough time, I consider myself to be one of the lucky 45 per cent that survived an initial misdiagnosed, tragically, I have met people that were not.

    John Griffin, Patient quote:

    The importance of an early diagnosis with kidney cancer is essential. I passed blood, I was in severe pain, I passed solids through the urinary tract and diagnosed as having kidney stones. The key indicators pointed to kidney stones, but this was a misdiagnosis. This was no fault of the hospital but there should be a screening programme for kidney cancer because a misdiagnosis can have catastrophic and fatal results. I was one of the lucky ones and count my blessings every day. We need a kidney cancer national screening programme to detect this silent killer before it is too late.

  • Group of medical doctors in laboratory.

    Phase 2 of study reports smaller tumors

    23 Oct 2018

    AVEO Pharmaceuticals and EUSA Pharma said the Phase 2 portion of a study evaluating a treatment for renal cell carcinoma, the most common type of kidney cancer, showed a total of 72% of patients reported around a quarter shrinkage in their tumors and that a majority of patients kept their disease under control for up to 48 weeks.

    The Phase 2 portion of the study was designed to assess the safety, tolerability, and anti-tumor activity of the full dose and schedule of PO tivozanib in combination with nivolumab developed by Bristol-Myers Squibb (NYSE:BMY). The combination was generally well tolerated, the company said. Treatment-related Grade 3/4 adverse events occurred in 60% of patients, the most common of which was hypertension.

    “With high and durable tumor shrinkage rates for the combination of tivozanib and nivolumab, including a complete response, coupled with a favorable tolerability profile and nearly all patients having disease control, the (TiNivo)  study continues to underscore a compelling rationale … in immuno-oncology combinations,” Doctor Bernard Escudier, the ex-chairman of the Genitourinary Oncology Committee, Gustave Roussy, and lead investigator of the study, said.

    He added that the ability to give an inhibitor and immuno-oncology agent “at full dose and strength could serve to deliver both improved outcomes and an improved patient experience.”

    “We continue to build out a clinical strategy for studying such combinations, and look forward to outlining our plans following reporting of topline data … which is expected in the mid-fourth quarter,” said Michael Bailey, president and CEO of AVEO.

    Tivozanib is an oral, once-daily, vascular endothelial growth factor (VEGF) tyrosine kinase inhibitor (TKI) and approved for the treatment of adult patients with advanced renal cell carcinoma (RCC) in the European Union plus Norway and Iceland.

    Read the full story here

  • Emma Campbell, kidney cancer patient

    Incidental CT scan turns Emma’s world on its head.

    26 Sep 2018

    Emma Campbell went to her GP with an ache in her rib cage and a CT scan discovers a 4cm tumour on her right kidney. This her kidney cancer journey.

    It was the Summer of 2012 and my life was happy. My son had just finished his first year in school in reception class. We had finally managed to sell our house after it being on the market for a year and all was well in my world. We had a family holiday booked to Spain to look forward to around the corner.

    I had been to the GPs on a couple of occasions with an ache in my left rib cage. The doctor sent me for an ultrasound scan which did not detect any cause for my pain. The discomfort continued so I was referred for a CT scan to get a more detailed look. A few days later on a Friday afternoon I received a phone call that changed my life forever. My GP told me that a 4cm tumour had shown up on my right kidney. This had nothing to do with the pain in my left rib cage. It was an incidental finding. That ache saved my life. I was diagnosed with renal cell carcinoma completely out of the blue, not a symptom in sight.

    That weekend was the longest of my life. Now, knowing I had cancer, but not knowing the severity of the situation, I was told I would be referred to the urology team under a two-week wait scheme. It was exactly 2 weeks until I first met a urology surgeon. The emotions running through my head were endless. I’m only 42, my son is 5, I can’t leave him without his mummy. I couldn’t eat, sleep, or concentrate on anything and every time I woke up I half expected it to have all gone away: It never did.

    I imagined the cancer inside of me, festering, spreading and I just wanted it out, and now! When I met with the surgeon, he told me that he was old fashioned and tended to remove whole kidneys. However, he had a younger colleague who had seen my scans and felt that he could use a robotic technique. This would preserve at least half of my kidney and he offered me the choice and being put in charge of such a decision was a challenge. Sometimes, you just want someone to tell you what to do! I decided to go with the robotic technique, from what I had read the same results were achievable without such major surgery.

    The countdown to the operation was difficult and had been told I was on the urgent list which meant up to a six-week wait and six-weeks it was; exactly! In the meantime, life had to go on. I had to tell my friends and family about my diagnosis and deal with all their reactions. I had to go to work as I didn’t want to use up all my sick pay, I would need it later.

    I loved my job as a community nurse specialist for the local hospice, however I had too much knowledge that may have given me a sound understanding but also terrified me. I was 10 steps ahead all of the time and endless worrying; was I allowing this cancer to grow and move whilst waiting?

    The big day arrived. A friend came to sit with my son and take him to school, I had to keep things together for his sake, while my husband drove me to Southmead Hospital in Bristol. I felt more nervous than I had ever felt in my entire life as I said goodbye to my husband, petrified I’d never see him again.

    The first time that I saw my surgeon, Mr Mark Wright, was when I was lying on the operating table about to be ‘put under’. Here was the man, a complete stranger whose expertise and skill I would need to get this cancer out of me. He reassured me things would be ok and the next time I saw him was early the next morning at the end of my bed; he was in his cycling gear! Surgery over, the operation was a little trickier than anticipated, it took three and a half hours, but he said he was pleased with how it had all gone.

    I had been told it was likely that I would need a three-night stay, unfortunately due to an infection I ended up staying in for 12 days. I felt very sore as I gingerly mobilised myself around the ward but the sense of relief at the cancer being removed was immense. Adding to that, the scars were neat and healed nicely. The next few weeks I spent recovering physically. Mentally it had been a real roller-coaster, but I had some amazing friends to support me. If anyone offers help, take it. People are genuine and like to feel useful, but they don’t always know what to do, so delegate!

    The best and simplest words of advice I had come in a card from my dear friend Roger; “take one day at a time”. That is so true. Avoid those people who tell you about so-and-so who had cancer, and what happened to them. When I was feeling overwhelmed this is the only coping mechanism that worked for me, I accessed support via local voluntary services in the form of counselling, relaxation and nutritional advice. I continued to talk to my close friends about how I was feeling, my fears and these were the ones who listened, loved me and were there for me; which is what I needed so much.

    I am so grateful for the normality of my everyday life and all the people in it. My son has just started secondary school, something I prayed I would still be here for and each Nativity, Easter and Harvest Festival I attended marks another milestone of still being here.

    Southmead Hospital, Bristol

    I recently had a scan which shows no recurrent disease!!! At six-years cancer free, I have now been officially discharged from follow-up care and through that time, the NHS looked after me so well. This is an achievement and something to quietly celebrate to myself. The worry is always there but I hope for a continued cancer free life, and to see my beautiful boy through the next chapter of his life with me firmly by his side.

    I wish you all well in your journey.

    Emma.

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