Our beautiful daughter, Poppy Jo Guilder, was a well, healthy & happy baby, when she was diagnosed with a large brain tumour in March 2004, then aged 14 months. Poppy’s only symptom was an occasional squint, but only when she was tired or under the weather. I took her to our GP with a chest infection in February 2004, he noticed her squint at this appointment & said he would refer us to our local hospital here in Tamworth. As Brian had also had a squint as a child, we were not too concerned, I remember just feeling upset that Poppy might have to wear a patch on one eye.

 

Brian took Poppy for a routine eye appointment about her squint on March 10th 2004, where the doctor suggested that Poppy might actually be blind in her right eye. We did not believe this. How could your child be blind in one eye without you knowing?? The doctor referred Poppy to Birmingham Children’s Hospital for further tests. When the hospital rang with this appointment only 2 days later, I remember the panic starting to set in. I even began mentioning brain tumours to people, as we had watched a documentary the previous week about a 2-year-old boy with one. Everyone, including me, thought that was just an over-anxious mother’s fear & that Poppy would be fine, after all apart from her squint she had no symptoms.

A nurse, then a doctor & then a consultant saw poppy at BCH on Tuesday 16th March. Mr. Wilshaw, the consultant, asked us if Poppy had ever had meningitis or a bump to her head as significant as being in a car crash. We answered â??noâ??. He explained that Poppy had no sight in her right eye, that there was something causing damage to her optic nerve & that they would need to carry out a brain scan. I remember asking â??when?â?? & when the consultant answered â??tomorrowâ?? I knew it was a brain tumour. I put my head in my hands & asked â??You are not looking for a brain tumour are you?â?? & he explained that they needed to rule that out first. I was then sick in the sink in the little room.

 

That night was a blur as we prepared ourselves to take Poppy for her MRI the next day. It was Wednesday 17th March 2004. Mr Wilshaw had promised us the results by Friday. Poppy was sedated & then taken down for her scan. I had cried all morning & continued crying all through the scan. When we came out of the scanner, none of the nurses could make eye contact with us. I kept saying â??they know itâ??s badâ?? with Brian trying so hard to reassure me that I was just being paranoid. He kept saying that Poppy had no symptoms, that she was fine. Looking back, Iâ??m not sure which was worse â?? me being eaten up by terrible fear that Poppy was going to die, or Brian absolutely believing that she would be fine.

The nurses had told us that we could take Poppy home an hour after she had woken up from sedation, but after that hour had passed, then another hour, they still would not let us go home, adding further to my paranoia. Then Brian was asked to take a phone call from Mr Wilshaw, who was in London that day. As I watched my strong, positive husband crumple on the phone in the ward office, I knew it was as bad as I had feared. Mr Wilshaw had told Brian that there was a tumour & it was much bigger than anyone had expected. I had never heard of an Oncologist before, but we were told that one would be coming up to speak to us. The nurses were so lovely & you could tell that they too were upset by this dreadful news.

 

Looking at Poppyâ??s first scans, the only thought going through my head was that she was going to die. How could she survive that?? The on-call-Oncologist was not a brain tumour specialist so he could not answer many of our questions, but we were allowed home with an appointment the next morning to see a Neurosurgeon. I remember coming out of BCH that day, to see the world was still carrying on as normal. I had expected that it would have stopped, our world certainly had. Our family & friends were amazing from day one, supporting us, listening to us, just being there always.

 

 

POPPYâ??S 1^ST SURGERY

 

We met Mr. Sygouros the next morning at BCH. He explained that the only option was surgery as Poppyâ??s tumour was so big. He said he would not be able to remove it all & he couldnâ??t guarantee that we would get Poppy back as well as she was. I remember looking over at my happy, bouncy little girl as Brian asked what would happen if we decided against the operation. â??She will be dead within monthsâ?? was the reply. So we asked about her chances of surviving the surgery â?? Mr Sygourosâ?? answer was â??a toss of a coin, 50/50â??. Our only choice was for her to have the operation on Monday 22^nd March or Monday 29^th March. After an hour of discussing we decided that we would give her until 29^th March. Mr Sygouros felt that one week would not make any difference, but if we were going to lose Poppy that gave us 10 whole days with her first.

In those 10 days we crammed so much in, we took Poppy to the seaside, the airport, the zoo, the farm â?? everywhere. How do you cram a whole life into 10 days? Brian & me took it in turns to cry, if one was the low, the other was strong & vice versa. Looking back it seems strange that we never asked about tumour types, cancer or chemotherapy. I think we really didnâ??t understand this new world we had been thrown into. We also felt as if we were the only parents in the world going through this. We did not do any research on the Internet; I guess we were too scared to find out anything at that point, we just focussed on enjoying these 10 precious days with our beautiful baby girl.

 

During those 10 days Poppy had further scans & we also visited the Oncology Department at BCH. That was where we first realised that we were not the only ones. We met many other parents, laying down those foundations of mutual support that are still so strong today. I think meeting others also allowed us to believe that Poppy could survive this operation.

Poppy had 8 hours of brain surgery on Monday March 29^th 2004. She went into theatre bouncing & waving â??bye byeâ??, so trusting, as if we were taking her somewhere to play, at 10am in the morning.  At about 1pm, Bri was a being shown the parent accomodation in Edward House by a nurse, when he saw Mr. Sygouros on his mobile phone in a corridor. Mr. Sygouros saw Bri & said ‘Oh, I was just calling you’. Bri said his immediate thought was ‘they’ve lost her’, but Mr. Sygouros said ‘The operation is going well, the tumour is hard not soft, they are just cutting away at it now, Poppy is fine, she’ll be in there another 5 hours or so. I’ve just nipped out for a sandwich!’. Bri said it certainly made him realise although Mr. Sygouros spends his days saving lives, it is just his job, all in a days work, amazing. After 8 hours of crying, praying & hoping, Poppy came out of theatre at 6pm that night. When Mr Sygouros told us that she was crying & moving all of her limbs, I could have picked him up & hugged him. The feeling we experienced that day is one that you really cannot put into words. We were the luckiest people in the world.  Poppy looked like a puppet, with wires attached at every possible point, tubes every where, but she was alive, crying & moving. Mr. Sygouros popped along to see her later & asked if she could see, when we replied ‘Yes’, he said ‘Phew!’, the risks of Poppy going completely blind were enormous.

Scans the next day showed that around 60% of Poppyâ??s tumour was removed, we then had to wait until the Friday to find out the tumour type. Poppyâ??s recovery was remarkable. She was crawling up & down the ward attached to her drip within a couple of days. We met some very special families during that week, many of whom we are still close to now.

Poppyâ??s histology results showed that her tumour was low grade, an Optic Chiasm Glioma or Juvenile Polycytic Astrocytoma. Mr Grundy, Poppyâ??s then Oncologist, felt fairly confident that the tumour would remain stable & that she would only need MRI scans every 3 months. So, Poppy came home on Saturday 3^rd April, her Daddyâ??s 34^th birthday. That was the day we decided to start fundraising, as we knew that BCH had saved Poppyâ??s life & we knew what a fantastic hospital it was. At that point, we hoped to raise about £1000. We felt that we were such lucky parents, the luckiest in the world.

 

POPPYâ??S 2^ND SURGERY

 

We spent many happy days at home during the next few weeks. Poppyâ??s recovery was amazing, apart from a lot of swelling, especially if she was excited or upset & CSF would form a huge lump where it had escaped through the hole in her skull. Poppyâ??s next scan was on Wednesday 19^th May 2004, we were told the results would be in 2 weeks time.  However, on the Friday night of 21^st May, Mr Grundy called us at home to say that almost all of the tumour had regrown & that Poppy would need another operation & then chemotherapy.

 

Poppy, now 17-months-old, underwent a 6-hour operation on June 9^th 2004. Her survival odds were better, 90% this time, but the fear was still as awful. We had been advised that as the 2 major operations were only 9 weeks apart, Poppy would be very poorly this time & would need to go to Intensive Care. Mr. Sygourosâ?? walk towards us on the ward after Poppyâ??s operation that day was heavy & slow. He was very disappointed that he had only been able to remove 40% of the tumour as Poppy had bled so heavily, but she was moving all of her limbs. We were just so grateful that she had survived yet again.

 

When we went down to see Poppy in the recovery room, we were expecting her to be asleep, very poorly, but she was sitting on a nurses lap crying, saying â??Mommy tuddle (cuddle)â??. What an amazing sight! Back n the ward, Poppy was still crying & asking for a drink. The nurses started off by giving her little sponges to suck on, but within 20 minutes she was drinking water from her bottle. Then Poppy started crying for toast. We all knew it was too soon, but an hour after surgery we gave in, deciding she may well be sick, but we could deal with it, the hunger was distressing her more. We will never forget the look on the Oncology Registrarâ??s face, the same one who earlier had told us Poppy would need to go to ICU, as he walked down the ward an hour after Poppyâ??s brain surgery to see her sat up, eating toast. His words were â??Where am I? Holby City??â??. And Poppy was not sick at all! Poppy is still remembered by many theatre staff now, for this amazing recovery! What an absolute star!!!

 

The next day, Mr Grundy, talked to us about chemotherapy. He explained that Poppy would need 2 drugs, Vincristin & Carboplatin, & that her treatment would start in a couple of weeks. So, we took our little girl home on her cousin Peter’s birthday (only 4 days after her surgery this time) to recover & build her strength ready for her next battle.

 

POPPYâ??S CHEMOTHERAPY

 

Before Poppyâ??s chemo started, we met again with Mr. Grundy. He explained that he had just returned from a Brain Tumour Conference in Boston. He said that new research showed that if they added Etoposide to Poppyâ??s chemo regime, she would have better odds of fighting her tumour. Evidence shows that Optic Chiasm Gliomas often behave more aggressively in younger children, Poppyâ??s had clearly followed this pattern. Mr. Grundy said that this chemo protocol had not been used at BCH before & that Poppy would be very ill, but we knew that it was her best chance. We now know how lucky we were that the new protocol had been discussed the week before Poppy started her chemo.

 

Poppy had her central line fitted on Friday 25th June 2004, her new â??wiggliesâ?? that would allow her chemo to be given. She then started chemo on Tuesday 29th June. The protocol was:

Week 1 â?? Tuesday Carbo/Etop/Vinc â?? Wednesday â?? Etop â?? Thursday â?? Etop

Week 2 â?? Tuesday Vinc

Week 3 â?? Tuesday Vinc

Week 4 â?? Tuesday Carbo/Etop/Vinc â?? Wednesday â?? Etop â?? Thursday â?? Etop

Week 5 â?? Tuesday Vinc

Week 6 â?? Tuesday Vinc

Week 7 â?? Tuesday Carbo/Etop/Vinc â?? Wednesday â?? Etop â?? Thursday â?? Etop

Week 8 â?? Tuesday Vinc

Week 9 â?? Tuesday Vinc

Week 10 â?? Tuesday Carbo/Etop/Vinc â?? Wednesday â?? Etop â?? Thursday â?? Etop

Taking us up to September 2004. After this heavy induction, Poppy would continue with:

Week 1 â?? Carbo/Vinc

Week 2 â?? Vinc

Week 3 â?? Vinc

Weeks 4, 5 & 6 â?? no chemo

This was to continue until January 2006.

 

Poppy was very ill initially, lots of infections & sickness, but in true Poppy-style she bounced back & soon took it all in her stride. Poppy having a temperature & being admitted to isolation became our new routine. A hospital bag was permanently packed. Poppy was usually home within 5 days, apart from one awful infection that hospitalised her for almost 3 weeks. We think her little body had just had enough at that point.

During this time, Poppy lost all of her hair, including her eyelashes & brows. She also had to have her Central Line replaced with a Vascuport (we asked for this instead of another central line) after the first line got caught under the drip stand while she was crawling & pulled out of her chest (a horrible moment that I blamed myself for & was in such a state that an anaesthetist was sent down to reassure me & calm me down). Poppy also developed a super bug in her tummy, called VRE, which meant that she had to be in isolation for every hospital stay during that time. Looking back, it was hard at times, but it really did become routine, like a special club that we were in. We made some fantastic friends with other families & the doctors & nurses & other staff at BCH.

 

 

During the chemo, Poppyâ??s tumour did shrink, which was amazing! It only happened once, a year into her treatment, every other scan was stable. We were thrilled. However, Poppy gradually became more allergic to Carboplatin, despite various attempts to stop this, & in October 2005 her reaction was serious enough for her chemo to be stopped. We had expected to plan a big end of chemo celebration, but because of the circumstances, it did not happen, I guess we were fearful that Poppy had not been able to complete her full course of chemo as planned. Poppyâ??s new consultant at that point was Dr Andrew Peet, as Mr Grundy had moved to the Queens Medical Centre in Nottingham.  Dr Peet reassured us that it was safe to now watch & wait with Poppyâ??s tumour. He was right, and Poppy remained stable until January 2007.

 

POPPYâ??S CYST SURGERY

 

Poppyâ??s scans from January 2007 showed activity within the tumour & the cyst that had filled the tumour cavity. We met again with Mr. Sygouros who felt that he could easily drain the cyst, Poppy was now 4-years-old. The operation was planned for Monday April 16th 2007. We flew back from Spain on 14^th April & Poppy was violently sick all of the way home. Her temperature was high & she had a terrible headache. We were really worried that the cyst had caused pressure inside her brain, so were very relieved to find out from the hospital that she simply had tonsillitis!!

 

Poppyâ??s op was rescheduled for Tuesday 15^th May 2007 (her cousin George’s birthday!). She was in theatre for 2 & half hours. Poppy was able to eat her lunch only half an hour later, although she then developed an allergic reaction to something (we still do not know what), & her face began to swell & turn bright red. Poppy was completely oblivious to this & luckily some Piriton soon sorted it out.

 

Mr. Sygouros came to tell us that he had removed a fair amount of fluid, but that it was a lot thicker than expected â?? jelly-like. He said it also had blood in it, suggesting either that Poppy had previously experienced a brain haemorrhage or that the tumour was re-growing. It is awful to think that we hoped it was a brain haemorrhage, but that option was far better than the thought of the tumour re-growing.

 

Poppy again made a remarkable recovery & was home the next day, telling everyone that she had a hole drilled in her head & some water sucked out with a straw!!! Bless her!

 

POPPYâ??S 2^ND CHEMOTHERAPY COURSE

 

After Poppy had her cyst drained, every 3-monthly scan showed change of some kind â?? the cyst was bigger & the tumour was bigger. Mr. Sygourosâ?? fears about the tumour re-growing were right. On January 29^th 2008, Poppy started another course of chemotherapy. This time, the protocol was simply going to be Vinblastine every week for 18 months. Poppy had a new Vascuport inserted & once again chemo began.

It was strange taking Poppy into the treatment room in Oncology Daycare, the room was the same, the staff were the same, Poppyâ??s play-therapist, Jenny, was the same, & yet Poppy had absolutely no recollection at all. It seemed strange that she could have had all of that previous treatment & not remember any of it, but it was a real blessing as it meant that Poppy also had no fear & that we were starting from scratch.

Poppy coped incredibly well with the weekly Vinblastine, just having Tuesday afternoons off school. I remember saying to my friend, Sarah, as we sat in clinic with Poppy & her daughter Abi, that Vinblastine was fab! I said Poppy hasnâ??t been sick, she hasnâ??t lost her hair (it did thin a little, but not noticeably) & she is just so well!! Looking back, perhaps I should have taken that as a sign that it wasnâ??t doing anything to the tumour either.

Poppy had a scan in April 2008, after 3 months of Vinblastine, and the tumour had doubled. So now, we were yet again back in a horrible place. We knew that the risks of surgery again were so high, Poppy could not have her old chemo protocol, as she was allergic to Carboplatin, the only option left was radiotherapy. We had tried to hold this off forever, as we knew the risks were high & permanent, but we had now reached the point where that was our only option.

 

 

POPPYâ??S RADIOTHERAPY

 

We had met with Dr Dan Ford in December 2007 to discuss the possibilities of radiotherapy. However, Dr Peet agreed with us that we should attempt Vinblastine before this decision was made. As the Vinblastine did not stop Poppyâ??s tumour growing, by April 2008 we were again in meetings with Dr Peet & Dr Ford. Dr Peet knew that we had wanted to avoid radiotherapy if possible & was extremely supportive at this difficult point, as he has always been throughout Poppyâ??s journey.

The first step was to make Poppyâ??s mask. She would wear this each day of the 28-days of planned radiotherapy at the QE Hospital in Birmingham. We were incredibly lucky, as Thomas, a school friend of Poppyâ??s, parents both worked in the Radiotherapy department at the QE. Thomasâ?? dad, Jason, actually made Poppyâ??s mask. This link really helped us, Jason & Clare were so lovely & reassuring.

Because of Poppyâ??s age, just 5 & a half, we were told that Poppy would probably need a GA every day. However, we worked very closely with Poppyâ??s lovely play therapist, Jenny, & with her support, that of Clare & Jason, the fantastic QE staff & a special cuddly cat called Kizzy, Poppy completed the whole 28 days wide awake!

Taking Poppy for her first radiotherapy session was so frightening. It was at another hospital, for adults, the staff were not familiar to us & most alarmingly we knew that the awful side effects of the treatment would be permanent. The initial side effects were temporary â?? hairloss, swelling, burnt skin & sickness. But the longer term side effects were more serious â?? some loss of IQ, more damage to Poppyâ??s sight, loss of concentration & possible secondary cancers in later life. Again, an awful treatment to have to agree to, but we had no other choice.

Poppy had radiotherapy every day (Mon-Fri) for 28 days. We would drive her to the QE hospital, she would skip round to Room 11 (much to the amusement of the adult cancer patients!), she would post her card in the box, then skip in when her name was called, lie down clutching her cuddly cat Kizzy, have her mask clamped on, lie still in the room on her own (we were not allowed to stay in there) while dancing her feet to either High School Musical or Disney Princess songs being played for her, then she would collect her sticker (we had made a diary for Poppy â?? each day she added a sticker & Friday was treat day where she had chosen somewhere special to go for the day!), then skip back to the car & be back in school by 10.30am & complete a full day in her Reception class!! Absolutely amazing!!! Poppy completed her radiotherapy on July 16th 2008, her Uncle Tony’s birthday this time!

In all of this time, Poppy only once complained of feeling sick. Her face did swell up, she lost a 1â? band of hair around her head, her skin was very red & sore â?? but Poppy took it all in her stride. We are always proud of her, but I think watching how she coped with this is something we will always remember as one of our proudest moments. Poppy was only 5, yet she coped with such an ordeal in a way we couldnâ??t have hoped possible.

Strange as it sounds, looking back those 6 weeks together, with me & Bri both off work (thanks to our fantastic employers), spending time together as a family every day & then taking Poppy somewhere special every Friday, is a time we will remember fondly. Yes, it was hard, but it brought us closer than ever & yet again, Poppy got us through it. We certainly are blessed to have such an amazing, brave, strong little girl.

POPPY TODAY

 

Poppy is a very bright, happy, beautiful little girl. She has a smile so big she can light up a room full of people! She is at a mainstream school & is in the top group in her class. She loves her dancing lessons & recently won a gold medal for her song & dance solo in a competition. Poppy also loves swimming, playing on her trampoline, playing with her friends & cousins, everything about High School Musical, Hannah Montana & The Little Mermaid. She has regular MRI scans to check the progress of the cyst & tumour, but both seem to be responding to the radiotherapy. She is blind in one eye & receives support from the Visual Impairment Team at school for this & concentration issues. We live day by day & are grateful for every moment with our brave, special, amazing little girl.