Amy O

05 June 2017

Story written 2017

In August 2014 when Amy was 7, she was diagnosed with childhood cancer neuroblastoma. A growth attached to her adrenal gland was found after a scan to find out why she kept having water infections. More tests were done and thankfully it had not spread. In November 2014 Amy was admitted to Birmingham Children’s hospital for an operation to remove the tumour, which was successful and she recovered well. She had to have regular scans to check for any relapse.

Up until November 2016 at the age of 9 and after two years of being clear, a routine scan showed it had returned in her pelvis, and chemotherapy was to start straight away. On 19th December Amy started chemo: she is still fighting and does it with a smile.

Update 10th January 2018

Amy has just finished chemotherapy and now is on six months of maintenance therapy and then hopefully by July she will get to ring the end of treatment bell. Amy loves receiving mail from post pals and waits most days for the postman.

Update 21st August 2017

Amy has just started her next round of chemotherapy and hopefully her last. She will be having 6 rounds, each round is five days of treatment with two weeks off in-between. She is doing really well so far after her first five days on chemotherapy.

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Izzy H

05 June 2017

Story written 2017

Izzy is a normal 3 year old. She loves to play, she’s very quick to learn, and has an infectious gorgeous laugh.  Unfortunately, Izzy was suffering from a UTI, and antibiotics were not curing it.  We kept taking her to the GP, but when the course of antibiotics finished, her right eye and stomach started swelling. The GP wasn’t sure why, tried new antibiotics, eye drops, and suspected it could be an allergy so we tried Piriton.  The GP even felt Izzy’s liver and said it felt firm, but thought it was normal and perhaps due to her UTI.  On Wednesday 22nd March 2017 we took her to A&E due to the size of her abdomen, and now the wheezing coming from the top of her lungs.  Sadly we were sent away, as she was not seen as a priority, and her chest sounded clear.  They did think she should have an ultrasound, but to wait for a few weeks and be put on the list for paediatric hot clinic.

Friday 24th March 2017 arrived, and Izzy was very uncomfortable, her stomach was even more distended and hard, and she was struggling to breathe, with her eye still swollen.  So we decided to take her back to A&E at 1pm, as Izzy was not herself at all.  This time we were taken more seriously, and seen by a number of doctors, all of whom poked and prodded, and said in the end she has a problem with her abdomen that they couldn’t treat at Kettering General.  They transferred us to QMC Nottingham on Saturday by ambulance under blue lights.

We were very worried, but at this point no-one mentioned cancer to us. It wasn’t until we met a doctor who works on the children’s ward, who has experience in oncology, did she explain very calmly that Izzy has a form of cancer, and this is the reason we were being transferred.  Saturday 25th March 2017, the day came when we moved to Nottingham.  We arrived around 16:00, and we were greeted on ward E39 by a lovely group of oncology nurses.  We felt lost, upset, angry, and confused.  We were unsure of what was going to happen, and exactly how poorly Izzy was.

We knew she was ill, but we didn’t appreciate how ill until Sunday 26th March arrived.  So, Mother’s Day was here, our son Joseph was with his Granddad, and we were stuck on a strange ward in a city we have never been to.  The day was busy with chest x-ray, ultrasound, and blood tests.  Monday 27th March, Izzy was told they couldn’t wait any longer, and she would be first on the list for her MRI, lumber puncture, and Hickman line to be put in.  We were told her tumours were very large, with the one on her adrenal gland and kidney being 7cm in size.  The fluids they had been pushing through her had caused her to move into tumour lysis.  We were then informed she is extremely poorly, and when she comes back from her general, she will remain sedated, and put on PICU, where she stayed for 4 nights.

Tuesday 28th March we received her full diagnosis from our consultant, who is a true expert in his field.  We were informed she has a stage 4 B cell non-Hodgkin leukaemia and lymphoma, which is also in all three categories (this covers solid tumours, liquid, bone marrow, bone and spinal fluid).   Our lives have changed forever, and seven weeks on we are still living at Nottingham QMC, away from all our family and friends, but being supported by an amazing team on E39.

 Update 6th August 2018

On 23rd July 2018 we received amazing news that Isabelle could stop having her IV anti-fungals Voriconazole and Caspofungin. This means so much to her and us, as now she isn’t attached to the syringe driver for 9.5 hours per day any more. She has been on those medicines for 10.5 months. We are going to Nottingham for blood tests to check the fungal infection doesn’t come back, as this caused her sepsis back in October 2017, due to invasive candidiasis in her liver, spleen and kidney.  The oncology community nurses from Northampton come once a week for blood tests.
We will keep on this new routine until otherwise.
Sadly she isn’t feeling well in herself again, at the point of writing. She has suffered from a nasty chest infection, and is in pain in her abdomen again. She also had a form of tonsillitis, even though her tonsils were removed before cancer, so this was a surprise, and a bit like deja vu. We just have everything crossed, she can be as strong as she has been, and keep everything crossed for her. Thanks to everyone for sending her post and keeping those smiles coming.

Update 6th January 2018

We made it home for Christmas after 40 weeks in hospital, and have remained at home. It was touch and go a week before, as she developed another UTI with a strain of E. coli resistant to some antibiotics, then she had an allergic reaction to one of the ones that would have worked.  It’s ok, she was put on a oral one that seems to be working, and is now on it once a night for 3 months.  We are still preparing her IV anti-fungal medicines at home, so our kitchen is half laboratory with supplies at the moment.  These infusions are attached to her and run for 3 1/2 hours in the morning, and 5 hours at nights.  We are so proud of Izzy, she has come so far from October, suffering from fungal sepsis, when the consultants were unsure of what else to try or if she would make it.  Thankfully 3 doses of IV immunoglobulin therapy saved her life during October, and November.

She has only managed 4 rounds of chemo out of the 6, and in August she was declared in remission.  Sadly the fungal infection has put a hold on her receiving the last 2 rounds, and they have decided that the risk would be  too high on making her extremely sick again.  On Jan 17th we go in for a ultrasound at Nottingham and review with Prof, this is to check the fungal infection abscesses in her liver, spleen and kidney.  They will also use it as a review for any tumours.  Bloods are being taking every week by community nurse for normal blood counts, fungal markers, voriconazole levels (as this can be toxic if too high, and is one of her IV anti fungal medicines), as well as any cancer abnormalities.

At the moment we are taking each day as it comes, and not rushing anything.  Fingers crossed she will continue as she is, and being the little fighter she always has been.

Thank you to everyone who has sent her post, cards, presents, made her some amazing gifts, or sent emails. They are really appreciated.

Update 21st August 2017

Izzy has finally completed round 4, we had one nights sleep (last night) at Billy’s House run by Clic Sargent, but now back on the ward due to side effects of the chemo. She is in quite a bit of pain again in her gut, and is already not tolerating nasal gastric feeds. She is on oramorph, gabapentin, and now a fentanyl patch has been put on today to help. Izzy has been on extremely intense chemo throughout the last four rounds, and has two to go before she can be rid of this awful illness. Over the last five months we have spent 90% of our time in hospital. With the other 10% mostly at Billy’s House, to be close to the hospital, and a few days at home altogether. At the end of August she has an MRI booked to see if all the solid tumours have gone from organs, and bone between the eyes. She will then have her bone marrow and spinal fluid analysed a few days later, to also check the cancer cells that were there, have now all gone. Nerve wracking time for us all.
A special note of thanks to everyone that has kindly been sending Izzy and Joseph post / presents and more importantly bringing them smiles. Thank you so so much!

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Lottie W

05 June 2017

Story written 2017

There were no signs or symptoms previously, she has always been a healthy little girl, happy, active, playful and bright – no causes for concern.

She caught a tummy bug, and it quickly spread to Mummy and Daddy, but everyone got over it and Lottie remained the same, just under the weather. She went to the childminder, and her sister mentioned Lottie’s tummy looked different that day.  Mummy collected Lottie early and went to the GP. The GP sent us to the hospital, and they did an X-ray and said Lottie had a blockage in her bowel and was most likely malnourished. Lottie’s favourite food was broccoli and sweet potato curry, she’s always had a broad spectrum of healthy foods. They then did an ultrasound….

Lottie and Mummy laid on the bed, and the ultrasound immediately showed a mass. A large black horrible looking mass. It measured 12cm.
Mummy and Daddy were told it was likely to be cancer. Within the hour we were placed in protective isolation at the local hospital and the Royal Marsden, Kings, St George’s and the Evalina were all consulted regarding Lottie’s high blood pressure and increasing abdomen.

Three days later and a transfer to St George’s was complete. Mummy and Daddy prepared for a biopsy, a Hickman line fitting and a bone marrow aspirate. Nanny slept on the floor at the end of Lottie’s bed, whilst Mummy slept in a chair and Daddy went home to look after Georgia and Jack. We were devastated, but had to remain strong.

Lottie went downhill very fast and was placed in PICU at St George’s, the mass was squeezing her lungs and affecting her blood pressure. It was splicing her diaphragm and she could no longer breathe on her own. We waited three agonising days for a diagnosis. No chemo can start until a diagnosis is reached.

On the 30th June at 1:15pm Dr Zacharoulis delivered the news. Neuroblastoma. Chemo was started that night. Immediately Lottie improved.

Seven days later she was transferred to The Royal Marsden. Seven rounds of chemo, three kidney function tests, numerous blood tests, countless nights in hospital. X-rays, CT Scans, bone marrow aspirates, general anaesthetics, NG tubes and so much more later we are fighting stronger than ever for our baby girl.

On the 25th of October Lottie had the now 3.6cm tumour removed. A gruelling 12 hour operation made successful by the amazing team at St George’s. Lottie then spent seven days in PICU, this timed sedated on a ventilator to keep her safe.

Our next steps are high dose chemotherapy, and stem cell transplant. Then comes radiation, and finally immunotherapy.

Neuroblastoma is a nasty disease, aggressive and harsh. It has a high rate of relapse and is the rarest form of childhood cancer.

Update 18th January 2018

Lottie is now undergoing treatment in the USA. We fundraised for her treatment with Solving Kids Cancer and raised a massive £155,000 to pay for a Vaccine Trial. Lottie travels back and forth to New York with her Mummy, so she misses long periods of her time at nursery. Lottie has lots of anxiety and needs a clear routine to keep her panic levels low. She also has lots of tests, such as bone marrow aspirates, PET Scans, and Ultrasounds. She is also experiencing Hypoglyceamic episodes, which means she  needs close monitoring as they come on very suddenly with no warning. Lottie can’t tell us when these are happening so we need to watch out for any tiny little signs. Her legs are very heavy and she struggles a lot with her balancing and running – some days are better than others. Currently Lottie is in remission and the Vaccine hopefully will keep her there.

Update 21st August 2017

Lottie is now in her immunotherapy phase of treatment having undergone; surgery, stem cell transplant, radiotherapy and now immunotherapy. Immunotherapy is causing lots of pain and issues that stop us leaving the house.

I’d like to thank everyone for their lovely cards, post, stickers and happy mail, they brighten our day!

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