Personal experience on MISCARRIAGE

Well i found out i was pregnant on Valentines Day 14th Feb 2011. We were so happy and excited to know that my partner was going to have his first baby (my second baby, my first is not his). He had been through a lot in his life and this really meant a lot to him. By my dates i should of been around 8 weeks pregnant. We went to the doctors to confirm it a few days after finding out,and then it all felt so real. We started telling close family and friends on each day that passed. On the 27th Feb our world started to fall apart but we didn't know that at that point. On 27th Feb i went to the toilet and when i wiped there was a bit of bright red blood there, didn't really think anything of it because it was only a little bit so i assumed it was just a bit of spotting. Later on that night i started to get a really bad back and belly ache, so then i started to think something was up. My partner phoned NHS and they said to keep an eye over night if the bleeding gets heavier then go straight to hospital but then advised if it was a miscarriage then there is nothing much they can do. Went to the toilet again and it was a bit more blood but still only light still thinking everything would be ok we went to bed. Next morning 28th Feb my bleeding got a little bit more so my partner insisted that we just went to the hospital. In A+E they put us in a little room told me to go wee in a pot, did test which indicated i was pregnant, told me again they are going to try book me in for a scan. We waited for about half an hour for them to come back to us to say whether we could have a scan or not. They came back eventually and said that i can have a scan to rule out ectopic, my mind started to panic at that point i did not know what was going on had never experienced anything like this before. Before going for a scan they took us up to a ward and a doctor told me to undress and lie on bed, at this point i could not stop crying the doctor was checking me inside it was awful. He said that he can see blood but my cervix was still closed which was a good sign. At this point i really started to feel better again because of what he said. We went and sat in the waiting room for the scan and it was not nice to be sat there with people pregnant with their bumps and stuff when i was going through this tough day, Went in for a scan the lady couldn't see nothing so had to do an internal one, again i had to take my trousers off. She did the internal and all that was on the screen was a sac with something so tiny in there. She said i was either 5 weeks pregnant or everything stopped growing at that point. I started to think that maybe i was only 5 weeks pregnant, by the time we got home the bleeding got a bit heavier but still i thought everything would be OK. Over the next week my bleeding got a lot heavier and i started losing clots, but was still being in denial. I lost quite a big clot which my mum said that would of been the sac. A few days before i went for another scan my bleeding had stopped, so i decided to do a pregnancy test. NEGATIVE. All day i just felt numb then at night i just broke down which resulted in my partner breaking down as well. I felt so torn up inside and i felt like i had let him down. The next few days are a blur but we went for other scan that confirmed that everything had gone. I felt worse that i was at home thinking that everything would be OK. Everyone was telling me i was miscarrying but i just would not believe them :-(. For weeks it was so hard to deal with, but in time it does get easier. I will never stop thinking about what could of been but i have to stay strong for my own sake.

Kendal - Neuroblastoma Story

Kendal was born in March 2010, our first girl made our family complete. Her big brothers Mason, Lewis andKarson adored Kendal instantly and showed her off eagerly to every visitor that came. Kendal grew so fast, just as her brothers had, and soon we were watching her smile and crawl and we came to know and love her sun shine little personality and her beaming smile. By the time Kendal was two she could talk very well and would tell us all about Hello Kitty even sing along to Peppa Pig.

Then one day Kendal told us her tummy hurt and she cried when she needed to poo. Days went by and our bright little girl seemed so quiet and withdrawn but our GP reassured us it was nothing to worry about and constipation can do this. Days turned into weeks but even our local hospital looked at Kendal and sent us home again. For too long now I had watched Kendal withdraw and I was sure there was something seriously wrong. I didn't want to waste the GP's time but I didn't know what else to do so I took her back and cried with her in the waiting room. This time our GP was worried and he sent us straight to A&E, although I was scared and shaking I was just relieved that we could finally get Kendal well again.

At the hospital tests were done, Kendal even had an ultrasound but before we knew it we were sent home again to wait for an appointment for a CT scan. That night I curled up with Kendal and tried not to let my tears splash her skin. The day of the scan arrived and we nervously waited to hear the results, a million things had gone through my mind, but not what we then heard, nothing had prepared me for the words that fell from his mouth that day... "We have found a tumour... your daughter has Cancer".

As the walls crushed in on me time seemed to not make any sense, everything moved so fast, an ambulance was called and my mind raced with questions but sheer terror prevented me from speaking. There seemed to be a hundred people telling me things all at once but with moments in between that were the loneliest in my life, I clutched Kendal tight and tried to make sense of it all, but all I could think was they must have made a mistake. This thought gave me some comfort and by the time we arrived at Leeds General I had convinced myself that the tests would show everything was OK, but as the consultant approached us with Kendal's new test results my heart sank and he confirmed the worst, Kendal did have Cancer, and worse than that, it was a terrible type of aggressive Cancer called Neuroblastoma, and it had spread to every bone in her body, Kendal was fighting for her life.

Chemotherapy began straight away, I can’t explain how it feels to watch chemo drip into your baby and how frightened yet grateful you are for the help everyone is giving you and the chance you are getting to save your child. The days are long though and the nights are even longer and I longed for someone to tell me what was going to happen and that everything would be OK. We researched online but the more we learned about Neuroblastoma the more helpless I felt, to learn that even if Kendal got through her treatment this time she would have an 80% chance of it coming back made me sick to my stomach but when I realised that there is no protocol here for relapsed Neuroblastoma I knew I had to learn more.

Then I met another mum who told me about a charity called Families Against Neuroblastoma and how they could help. Through their support group we learned about other children and what their parents were doing to help their child. We learned about other treatments that were not currently available on the NHS and we wanted that chance for Kendal too. Although there was no way in the world we could afford them, with some treatments costing more than £500,000.00 we felt positive that there was something we could do to help give Kendal a better chance.

 

Kendal has shown us just how strong she is and just how much life she has bursting inside her, she still adores Hello Kitty and sings along to Peppa Pig once more, all she wants is to jump in muddy puddles again and play with her big brothers, all we want is for her to have the chance.Laine and Stuart, Kendal's Mummy and Daddy.

 

Millie Rose - Neuroblastoma Story

Millie - Rose came into our lives on 14th June 2011, a much loved and wanted sister to Michael and Lexie and daughter to ourselves, Lyndsay and Michael.
Summer 2012 not long before Millie’s first birthday we noticed Millie was not quite herself, struggling to dirty her nappy, screaming in pain each time she needed to go and she seemed to catch every bug virus going. Drs gave her various antibiotics, calpol and lactulose. Nothing ever seemed to work though, despite all this she was still a happy friendly loveable little girl.

Christmas 2012 is when we noticed Millie was losing a bit of weight and again seemed to be catching every bug going, me and Millie's dad took her to the hospital, walk in centre and local GPs at least once a week, they put it down to ear infections again giving her lots of antibiotics etc.

February came and our beautiful girl wasn't getting any better, she was in fact worse even after the hospital put her on iron as she was very anaemic. Millie’s eyes became black and swollen and a lump appeared on her head even though she had no energy to move so couldn’t have banged it. We made the decision to take Millie to Alder Hey, a children’s hospital as we weren’t getting real answers from any medical people close by.

When we arrived at the hospital Millie was seen straight away even though there was a 3hour waiting time, she had lots of tests. The next day we were met by lots of doctor and one had a very serious look on his face, we knew it was going to be bad news but neither of us were prepared for what he said... "Your daughter has Cancer".

Further tests were carried out; we were in so much shock I don’t think I knew what the tests were for. Time seemed to stop, I wondered if they were testing her again to see if they had made a mistake but when we were met once again by another serious faced doctor my heart sank. He told us Millie had Neuroblastoma, a very aggressive and hard to treat Cancer, and she was in the final stages, Millie was in serious trouble, we were numb.

Chemotherapy started straight away, we focussed on Millie and tried to stay positive. Inside we were going through every emotion possible, devastation, heartbreak, despair, denial, blind panic, anger and then came the harsh realisation of what this cancer could do to our beautiful Millie Rose. This was when we started to research the disease and we began to learn about what that really meant for us as a family. We realised even if Millie could beat this monster there was an 80% chance it could come back, and if it did there is no relapse protocol in the UK.

Millie has finished her 80 days of chemotherapy and started TVD on 20/5/2013 as her bone marrow still has disease in it.

Millie loves peppa pig, mickey and minnie mouse and playing with her big brother and sister at home. She is the baby of our family and our whole world, all we want is for our baby to be able to grow up into a healthy young woman we can’t let this disease take her away from our family

 

Neuroblastoma

Neuroblastoma

Signs and symptoms of Neuroblastoma

The symptoms vary depending on where your child’s tumor is.  The first symptoms are vague, such as tiredness, loss of appetite and pain in the bones. More specific symptoms will depend on where the Neuroblastoma starts:

 

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If the tumor is in the abdomen, your child’s tummy may be swollen and they may complain of constipation or have difficulty passing urine.

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If the tumor affects the chest area, your child may be breathless and have difficulty swallowing.

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If the tumor occurs in the neck, it's often visible as a lump and occasionally affects breathing and swallowing.

 

 

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Occasionally, there are deposits of Neuroblastoma in the skin that appear as small, blue-coloured lumps.

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If the tumour is pressing on the spinal cord, children may have weakness in the legs and walk unsteadily. If your child is not yet walking, you may notice reduced leg movements. They may also have constipation or difficulty passing urine.

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Very rarely, children may have jerky eye and muscle movements, and general unsteadiness associated with the Neuroblastoma.

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Your child may also have high blood pressure.

How Neuroblastoma is diagnosed

A variety of tests and investigations may be needed to diagnose Neuroblastoma. These include a biopsy, blood and bone marrow tests, x-rays, CT or MRI scans, and special nuclear medicine scans called MIBG. The tests are done to find out if your child definitely has Neuroblastoma and what the exact position of the original tumor site is within the body. The tests will also find out whether the Neuroblastoma has spread.

The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the particular type and stage of the cancer helps the doctors to decide on the best treatment for your child. 

A commonly used staging system for Neuroblastoma is described below.

Stage 1

The cancer is contained within one area of the body (localised) and there's no evidence of it having spread. It can be completely removed by surgery, or there may be very small (microscopic) amounts of tumour left after surgery.

 

Stage 2A

The cancer is localised and has not begun to spread, but it cannot be completely removed by surgery.

Stage 2B

The cancer is localised and has begun to spread into nearby lymph nodes.

 

Stage 3

The cancer has spread into surrounding organs and structures, but has not spread to distant areas of the body.

 

Stage 4

The cancer has spread to distant lymph nodes, bone, bone marrow, the liver, the skin or other organs.

Stage 4S (also called special Neuroblastoma)

This is found in children under one year old. The cancer is localised (as in stage 1, 2A or 2B) but has begun to spread to the liver, skin or bone marrow.

 

Stage L1

The tumour is localised and has not spread into important areas (vital structures) nearby. It can be removed by surgery.

Stage L2

The tumour is localised but has 'image-defined risk factors' and can't be safely removed by surgery.

 

 

 

 Stage M

The tumour has spread to other parts of the body.

Stage MS

The tumour has spread to the skin, liver and/or the bone marrow in children younger than 18 months old.

If the cancer has spread to distant parts of the body, this is known as secondary or metastatic cancer.

If the cancer comes back after initial treatment, this is known as recurrent or relapsed cancer.

 

Treatment for Neuroblastoma

The treatment of Neuroblastoma depends on the age of the child, the size and position of the tumor, the tumor biology (including the MYCN status) and whether the Neuroblastoma has spread. 

 

Surgery

For tumours that have not spread (localised tumours), the treatment is usually surgery. If the tumor is at an early stage and there's no evidence that it has spread to the lymph nodes or any other parts of the body, an operation to remove the tumor, or as much of it as possible, will be done.

A cure is usually possible for children with localized tumors. However, if the tumor is classed as high-risk due to the tumor biology results, further treatment with chemotherapy and possibly radiotherapy will be needed. If the tumor is, at first, too large or in too difficult a position to remove safely, chemotherapy will be given to shrink it before surgery.

Chemotherapy

If the tumor has already spread by the time of diagnosis, or is indicated as being high-risk by the tumor biology result, intensive chemotherapy is needed. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It's usually given as a drip or injection into a vein. Your child's specialist will discuss with you the type and amount of chemotherapy needed.

 

High-dose chemotherapy with stem cell support

If the Neuroblastoma has spread to several parts of the body, or is high-risk with MYCN amplification, high-dose chemotherapy with stem cell support is used after the initial courses of chemotherapy.

 

 

 

High doses of chemotherapy wipe out any remaining Neuroblastoma cells, but they also wipe out the body's bone marrow, where blood cells are made. To prevent the problems this causes, stem cells (blood cells at their earliest stages of development) are collected from your child through a drip before the chemotherapy is given. These stem cells are then frozen and stored.

After the chemotherapy, the stem cells are given back to your child through a drip. They make their way into the bone marrow, where they grow and develop into mature blood cells over a period of 14-21 days.

 

Monoclonal antibody treatment

Monocolonal antibodies can destroy some types of cancer cells while causing little harm to normal cells. A new monoclonal antibody treatment called anti-GD2 is currently being tested in people with high-risk Neuroblastoma. Children in the UK with high-risk Neuroblastoma are being given anti-GD2 as part of a clinical trial. There is good evidence from a clinical trial carried out in America in 2009 that this may be a promising therapy when given alongside other standard treatment for Neuroblastoma.

Radiotherapy

External radiotherapy may be given if the Neuroblastoma is high-risk, or has spread to several parts of the body. This uses high-energy rays to destroy the cancer cells, while doing as little harm as possible to normal cells. External radiotherapy is given from a machine outside the body.

Internal radiotherapy may sometimes be given using radioactive MIBG. Radioactive MIBG is similar to the MIBG used in an investigation to diagnose a Neuroblastoma (see above), but uses higher doses of radioactivity to kill the cancer cells.

Follow-up

Follow-up after treatment usually involves regular visits to the hospital outpatients department, with scans and urine tests as necessary. For children who have had chemotherapy and/or radiotherapy, more specialised tests may be carried out. For example, hearing tests, kidney and heart function tests, and checking hormone levels. These will be repeated until your child has grown up.

If you have specific concerns about your child’s condition and treatment, it's best to discuss them with your child’s doctor, who knows their situation in detail

Cancer

Cancer is a condition where cells in a specific part of the body grow and reproduce uncontrollably. The cancerous cells can invade and destroy surrounding healthy tissue, including organs.

Cancer sometimes begins in one part of the body before spreading to other areas. This process is known as metastasis.

There are over 200 different types of cancer, each with its own methods of diagnosis and treatment.

How common is cancer?

Cancer is a common condition. In 2009, 320,467 new cases of cancer were diagnosed in the UK. More than one in three people will develop some form of cancer during their lifetime.

In the UK, the most common types of cancer are:

• breast cancer 
• prostate cancer 
• lung cancer 
• bowel cancer 
• bladder cancer 
• uterine (womb) cancer 

Cancer treatment

Each specific type of cancer has its own set of treatment methods.

However, many cases of cancer are treated usingchemotherapy (powerful cancer-killing medication) andradiotherapy (the controlled use of high energy X-rays). Surgery is also sometimes carried out to remove cancerous tissue.

Waiting times

Accurately diagnosing cancer can take weeks or months. As cancer often develops slowly, over several years, waiting for a few weeks will not usually impact on the effectiveness of treatment.

Patients suspected of having cancer and urgently referred by their GP, should have no more than a two week wait to see a specialist.

In cases where cancer has been confirmed, patients should wait no more than 31 days from the decision to treat to the start of their treatment.

In 2010-11, 95.5% of patients who were urgently referred for suspected cancer were seen by a specialist within 14 days of referral.

In the same period, 98.4% of patients receiving their first treatment for cancer began their treatment within 31 days.

For breast cancer, 99.1% of people began their treatment within 31 days of diagnosis.

Reducing your risk of cancer

Making some simple changes to your lifestyle can significantly reduce your risk of developing cancer. For example, healthy eating, taking regular exercise and not smoking will all help lower your risk.

Spotting signs of cancer

Changes to your body's normal processes or symptoms that are out of the ordinary can sometimes be an early sign of cancer.

For example, a lump that suddenly appears on your body, unexplained bleeding or changes to your bowel habits are all symptoms that need to be checked by a doctor.

In many cases, your symptoms will not be related to cancer and will be caused by other, non-cancerous health conditions. However, it is still important that you see your GP so your symptoms can be investigated.

See your GP if you notice a lump in your breast, or if you have a lump that is rapidly increasing in size elsewhere on your body.

Your GP will refer you to a specialist for tests if they think you may have cancer.

You should visit your GP if you have had a cough for more than three weeks.

Symptoms such as shortness of breath or chest pain may be a sign of an acute (severe) condition, such as pneumonia (a lung infection). Go to see your GP straight away if you experience these types of symptoms.

if you have experienced one of the changes listed below and it has lasted for more than a few weeks, 

• blood in your stools
• diarrhoea or constipation for no obvious reason
• a feeling of not having fully emptied your bowels after going to the toilet
• pain in your abdomen (tummy) or your anus (back passage)
• persistent bloating

You should also go to see your GP if you have any unexplained bleeding such as:

• blood in your urine
• bleeding between periods
• blood from your back passage
• blood when you cough
• blood in your vomit 

We suggest that if you have a mole that has characteristics from the list below then we suggest you go and see your GP

• has an irregular or asymmetrical shape
• has an irregular border with jagged edges
• has more than one colour (it may be flecked with brown, black, red, pink or white)
• is bigger then 7mm in diameter
• is itchy, crusting or bleeding

Any of the above changes means that there is a chance you have malignant melanoma (skin cancer).

Unexplained weight loss

You should also go to see your GP if you have lost a lot of weight over the last couple of months that cannot be explained by changes to your diet, exercise or stress.