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Tests, tears & chemotherapy…

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The day began with a huge wake up call. The night shift nurse came by to check Eleanor’s port was working and to take a blood test prior to her chemotherapy treatment which would begin later that day. The line that was inserted into Eleanor’s port, or her ‘wiggle’ as she affectionately refers to it, wasn’t playing ball, it appeared that it may have been dislodged in the night or moved when Eleanor had been tugging on it when she was coming around from the anesthetic. There was only one thing for it, the dressing needed to be removed, as well as the line and a new one inserted so they could be sure that the port was in working order.

It was 6:30am and Eleanor screamed for the entire 10 minutes it took for our very lovely nurse to take off the huge dressing and remove the needle that was inserted into the port.  Then as there was no time to apply any local anesthetic to the area, the new needle had to be inserted without anything to numb the pain. Cue another bout of screaming. When it was over I’m not sure who looked more traumatised!

 

Image: Port-a-cath needle and line

After a few hours, some breakfast and before Tim and my Mum arrived we were whisked off to the Nuclear medicine department so Eleanor could start the process of an EDTA test. This would test the function of her kidneys by injecting a small amount of radioactive material (called EDTA) into her blood. A blood test would then be performed at two, three and four hours later to test how her kidneys had processed the EDTA. This went as well as the first part of the morning, with Eleanor screaming and refusing to hold out her cannulated hand, it took three of us about 15 minutes to persuade her it wouldn’t hurt whilst using bribes ranging from a sticker to a whole book of stickers (plus the standard sweets and chocolates I am sure most parents resort to in times of need!) Thankfully, eventually she relented. Sat on my lap she cuddled me tight and the first part of the test was performed, we were then taken back down to the ward to wait for Tim to arrive and to play for a couple of hours before the first blood test needed to be taken.

Tim and my Mum arrived shortly after we got back so I took the opportunity to head off for a shower while they entertained Eleanor and she told them all about her morning.

When I closed the door of the shower room behind me, I had to take a deep breath to stop myself from bursting into tears. I had been running on adrenalin all morning and suddenly it all seemed to wear off and it became overwhelming again. I put the toilet seat down and sat there for a few minutes with my head in my hands, just telling myself to breathe and that it was all going to be OK. I held it together until I was in the shower and then a whole weeks worth of emotion flooded out all at once. I sat on the floor of the shower and cried like a baby. I cried because I couldn’t believe it was happening. I cried because seeing my little girl so frightened was by far the worst pain in the world. I cried because I thought, if I feel this weak and overwhelmed so early on how will I ever cope with the roller coaster that is sure to follow. I have never asked ‘why us’ at any point in our journey so far. I cannot justify asking that question as to me that means that I would wish for it to be someone else, instead of us. I can honestly say that I would not wish this on my worst enemy.

The afternoon came and went quickly with visits from various people. We met a dietician. We had a nice chat with a Clic Sergeant social worker who talked to us about the support they can offer us along with a tonne of other information. IMG_0013We were also given a book called ‘Mary has a brain tumour’ I’m sure it is a great resource for children to understand what is happening to them, but it’s not really my idea of a bedtime story. I think I will stick to the Mr Men books!

A play specialist came around and talked to us about Beads of Courage  and Chemo Duck (I will talk more about these incredibly rewarding programmes in future posts, they really are simple yet extraordinary concepts!) Then before we knew it the nurse popped by to tell us that the chemotherapy was ready and that we could start.

On Eleanor’s treatment protocol, she is given two different chemotherapy drugs; Vincristine and Carboplatin. In Eleanor’s case, Vincristine is given in syringe form (a push) it is a quick process where the syringe is just attached to her ‘wiggle’ and pushed through over a few minutes. The Carboplatin is an infusion so she is attached to a machine which drip feeds the treatment in to her over an hour. Toilet trips are fun as it means wheeling the machine and directing Eleanor without getting tangled up in the wires!

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Once the chemotherapy treatment was complete we were told we could go home that night as long as Eleanor seemed well and that she showed no signs of a reaction to the drugs. After a little while we were given our discharge papers along with a plethora of anti-sickness drugs and antibiotics and sent home to return a week later for chemo number two.

Magic button day!

On the morning of the 15th January, only a week later we made our way to the Royal Marsden Children’s unit to prepare for the operation to fit Eleanor’s portacath, and to meet the team at our lead hospital.

After a little wait, we had a meeting with Eleanor’s oncologist.  We asked some questions now that we’d had some more time to digest everything and we were given the chance to see the pictures of the MRI scan. This was the first time we had seen the size and location of the tumour. When I saw the first scan I was amazed at how huge the tumour looked. I stared at it trying to imagine it inside my daughter’s head. 3.4cm. There is a 3.4cm tumour inside my daughter’s head. It is impossible to imagine. I don’t think it will ever seem real.

Due to the fight Eleanor put up with the ‘smelly mask’ the last time she had an anaesthetic we were given a pre-med to sedate her slightly. It took Tim much longer to convince her to take it than it did for it to take effect. Within minutes she was starting to get wobbly legs, insisting she wanted to walk when she clearly couldn’t, waving around a bald Barbie Doll one of the play specialists had given her as a gift (Ella, Barbies chemo counterpart complete with wigs and a headscarf – thanks Mattel!) and babbling like a drunk!

Before we knew it we were whisked off to theatre to put our baby girl in the hands of her surgeon. Despite the pre-med, Eleanor still put up a fight when the mask was put on her face and managed to give the anaesthetist a nice sharp kick between the legs before she went off to sleep! Don’t mess with a hungry child!

While the operation was underway we were shown to the ward where we would be spending the night and waited anxiously for someone to tell us that we could go and see her.

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When Eleanor came around she was not the happy little girl she had been after her MRI the week before. She was distressed, sobbing and trying to sit up so I was told to climb on the bed to try and settle her while we were wheeled down to the ward. It took a while for her to wake properly and she spent the remainder of the day either sleeping or crying. It was heartbreaking to see her so upset and in pain knowing all I could do was just be there and keep reassuring her. I was also caught between the curiosity of wanting to see where her portacath had been placed and not wanting to believe someone had just cut her open, but because my curiosity always wins out I looked, and then wished I hadn’t!

That night the nurses came by regularly to check her and once again I lay in the bed next to her watching her sleep, wondering if this would ever become ‘normal’ life or if I would always feel this scared.

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And so it begins…

We were soon greeted by a specialist nurse at Eleanor’s recovery bedside, she told us she would be taking us to the ward where we would be staying and that we would be visited the following day by a neurosurgeon who would be able to give us more information. At this point we had no idea how long we would be staying and all I could think was that I didn’t have any pyjamas to sleep in, like THAT was suddenly important, it is incredible what rubbish comes in to your mind at times of panic! The specialist nurse showed us to the ward and over to what was to be Eleanor’s bed, passing the parents kitchen she told me there was a shared fridge where we could keep our food. I remember holding Eleanor tight in my arms and wanting to scream at the top of my lungs. I didn’t want to know about this parents kitchen or the play room or the times that meals are provided. I did not want to be there, I just wanted to go home and take my baby girl with me. Eleanor was in full spirits and within minutes she was entertaining the ward doing her best XFactor auditions. Tim stayed for as long as he could, he spent a small fortune on snacks in the Marks & Spencer and then left with a list of things he needed to bring for the days ahead. I hated watching him leave, it felt barbaric for them to separate us after such devastating news. I didn’t sleep that night, I lay there in my clothes on a hard leather chair/bed staring at my little girl, crying so hard it gave me a headache, praying and praying that they had made a mistake and this was all one big misunderstanding. At one point I got up and sat in the empty bay window and stared out over London, wondering how many other parents were doing exactly as I was at that moment. It was so surreal, like a movie, except it wasn’t a movie. It was happening and I had never been so scared in my life.

The next day came and when Tim arrived in the morning with my Mum I was so grateful to see them (and for my clean clothes, underwear and makeup remover!) we passed the morning with a little walk around the ward and battling with Eleanor to take her medicine. I was lying on the bed with her at one point snoozing when an important looking man in a suit came over to the bed. We were expecting to be meeting a consultant neurosurgeon so when this man introduced himself as a consultant oncologist I was confused, an oncologist!? A cancer doctor!? Cancer didn’t even enter my thoughts when we were told there was something in Eleanor’s head. Why was a cancer doctor coming to see us!?

The doctor took us to a room where he sat with us and explained what they had found in Eleanor’s head. The magic name for Eleanor’s tumour is a ‘Hypothalamic Glioma’ or ‘Pilocytic Astrocytoma’. The tumour has also invaded the Optic Chiasm which is why her vision has been affected. We were told surgery would be avoided at all costs due to the location of the tumour. The Hypothalamus is deep inside the brain and any surgery, even a biopsy could cause more damage than good. The doctor explained that this type of tumour is usually benign (low grade I or II) but it will be treated with chemotherapy regardless. Chemotherapy, another cancer word. That word evokes images of balding children, with tubes everywhere fighting terrible illnesses. I was terrified. I started to get upset about her losing her hair, another stupid, and in the grand scheme of things, pretty insignificant thought.

We were told Eleanor would need to have a portacath fitted on her chest under her skin so they could start chemotherapy as soon as possible.

That night we were discharged and allowed to go home for a week and that the next step would be an operation to fit the portacath. Eleanor and my Mum skipped out of the hospital that night laughing and giggling that they were escaping, it made me feel sick to my stomach that hospitals would very soon be a much larger part of our lives than I had ever imagined.

This sort of thing happens to other people. Doesn’t it?

I always wondered how I would react when faced with really devastating news. I mean, I remember being dumped by boyfriends when I was younger and that was pretty hideous. Days and nights crying into my pillow, listening to Mariah Carey songs, thinking my life was over. I would never meet anyone ever again and would end up alone with a hundred cats! But truly heartbreaking traumatic news was something that I had fortunately never experienced first hand in my life.

I thought I would sit there absorbing words before it actually hit me, numb, staring at the person talking to me. That, was far from how it happened when that day came to meet me.

On the 8th January 2015 we arrived at St George’s Hospital in Tooting for Eleanor’s MRI scan. I had been upbeat that morning, still convincing myself that Eleanor was short sighted and this was all precautionary, they were just ruling out the worst case scenario. Tim was beside himself, telling me he didn’t deal with his general anaesthetic well when he had one in the past, the thought of someone putting his daughter to sleep was just too much for him. After a consultation with the anaesthetist we waited a little while for the general anaesthetic MRI team to be ready.

After a short wait we were called and taken through to a room where Eleanor would be given her anaesthetic. I sat with her on my lap while they placed a mask over her nose and mouth. We had explained that this would happen and she knew what it was for but that didn’t make an ounce of difference. Now, anyone who has seen my daughter will know, she is a waif of a thing, not an ounce of fat on her body but my goodness that girl can fight! It took four fully grown adults to hold her down to keep that mask on her face long enough for it to take effect. It was like the eye drop fiasco all over again. I was holding my child down while she screamed my name and stared in wide eyed panic at me. Why was I letting this happen to her? at 3 years old she couldn’t possibly begin to understand what on earth was going on and as her mother I should be helping her not holding her down! When the gas finally made her body go limp, she was still crying and semi-hyperventilating, I stood and placed her on the bed, standing over her I looked in stunned silence, did that really just happen? The anaesthetist turned to us as told us we could leave her now and that they would come and find us once the scan was complete. Sorry? did you just say “you can leave”!? I stared back at her, how could I leave her, she was still crying in her sleep, I couldn’t bare the thought of her waking up after being in such a state. Tim took my hand and we prepared ourselves to leave the room, I turned one last time to see Eleanor lying on that bed and as we walked away I remember the anaesthetist saying “Don’t worry, we will take good care of her”

We sat mostly in silence in a children’s waiting room while the minutes ticked by, 20 minutes passed… 30 minutes… 40 minutes… 45 minutes. I was starting to feel the panic rise and I sat on Tim’s lap watching the clock hands slowly move. After almost a whole hour the door opened and the anaesthetist who had spoken to us returned, slowly closing the door behind her. Now I am not very good at reading people, I am terrible in fact and more often than not I get it completely wrong, but I could tell, I could tell by the perturbed look on her face that she had something to tell us which she knew we would not like. I felt Tim grip me around my waist as she took a seat in front of us and said words that I never ever thought I would have to hear…

“OK, so we have found something”

I immediately bent forward, my head in my hands sobbing as I heard her talking to Tim. I couldn’t tell you what she was saying just certain words; ‘tumour’ ‘neurosurgeon’ ‘surgery’ ‘admission’ ‘steroids’. I felt like everything was rushing at me, I couldn’t breathe, I got up and walked into a little room which had a bed in it and sat on it crying while Tim took the reigns and asked the important questions. We were told that Eleanor would need to be admitted immediately to begin a short course of steroids, bringing down any potential swelling around her tumour.

The anaesthetist told us that Eleanor had not come around yet and that she would leave us alone for a few minutes and come back to get us as soon as she stirred. Tim just held me tight, both of us trying to be strong for each other. The next thing I had to do was call my Mum. I don’t know how I did that. I couldn’t tell you what I said to her. I didn’t want to break her heart the way mine had just been broken.

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When Eleanor started to stir we were walked around to see her in recovery, she woke with a smile on her face and sat eating olives while I stroked her head and Tim made some calls. I kept looking at her imagining that thing in her head. She looked so perfect and beautiful sitting there in front of me munching on olives, she didn’t look unwell. I almost wanted to grab her out of the bed and run away, like that was going to solve the problem. I felt like I was on a bouncy cloud, like I had been drinking wine on an empty stomach and my head was a bit cloudy and everything was moving in slow motion around me. This sort of thing happens to other people, doesn’t it.  Apparently not.

A trip to Moorfields…

On the 5th January 2015 we took Eleanor to Moorfields paediatric walk in clinic and were quickly assessed by a triage nurse and sent in for a test in another room with another nurse. I remember a doctor sweeping into the room a few minutes after we had entered. He addressed Eleanor, but not us, did a brief examination and then turned to a nurse and muttered a few long medical sounding words, why do they do that!?? Most of the things he said went straight over my head but one phrase stuck in my head and made every nerve ending in my body react; ‘gross occlusion’. Occlusion means blockage, right? and what could be causing a blockage!? My mind was on overdrive and after seeing a few more people we were sent in to see a consultant who would be putting some drops in to Eleanor’s eyes to dilate her pupils, this would help the consultant to see more clearly and hopefully be able to tell us why our daughter was struggling to see. The experience was horrible, Eleanor screamed in pain when the drops were put in her eyes and we had to hold her down as she fought and kicked us. It goes against every natural instinct in your body to hold your child down while someone causes them distress, I wanted to help and at the same time punch the consultant.

When medical professionals look concerned, how do you hold yourself together? How do you carry on convincing yourself that everything will be fine?

After the eye drop trauma we were sent up to see Moorefield’s consultant paediatrician. After examining Eleanor he told us an MRI scan of her head would be required to determine exactly why there was such a rapid decline in her vision. He said he would need to call some colleagues at our local hospital, so we were sent to sit in the waiting room. I find it hard to put into words how I felt at that point, I was shaking and probably looked like a rabbit caught in the headlights of a big lorry! Utter panic seemed to wash over in waves, but still, deep down, I had a feeling that it would all be fine. The consultant called us back in and told us that he wanted us to immediately take her to Kingston Paediatric A&E and handed us a sealed letter to give to the paediatric consultant on duty that night.

We got the tube home. Eleanor was tired, she had not been very interested in food and it had been a long day for her. She fell asleep on me and I held Tim’s hand tight, all the time staring ahead, tears rolling down my face and every single outcome rushing through my mind.

When we arrived at Kingston Paediatric A&E we were quickly ushered into a room and a local anaesthetic cream was placed on Eleanor’s hands so they could take some blood without causing her too much distress. We were in A&E for a few hours in total while examinations were performed by a couple of different doctors and a blood test was taken. On the surface Eleanor appeared in good health, there was no need for her to be admitted and we could go home. The doctors told us an urgent MRI of her head would need to be arranged and that we would get a call with a date very soon.

The waiting game that would become so prevalent in our journey had only just begun.

Christmas 2014 & a visit to the GP…

Christmas was upon us before we knew it, we spent a week staying with my parents and spending time with my family on the South Coast and as usual Eleanor was spoiled rotten! We even managed a few windy trips to the beach, one of Eleanor’s favourite places.

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As soon as Christmas was over we headed back to London and booked an urgent appointment with our GP to get Eleanor her hospital referral. We visited the GP on the 30th December and he was great, he wrote an immediate referral letter and faxed it that day to Kingston Upon Thames’s Royal Eye Unit. After the new year celebrations and just three days later on the 2nd January we called the eye unit to confirm that our referral had been received and asked how long it would be before Eleanor could be seen by a specialist. By now we were really noticing the decline in her sight. We were told that our referral had been received and that it was with the consultant who priorities cases as they see fit. Tim was unhappy that things were not moving quickly enough and on the same day, made enquiries to take Eleanor to a walk in clinic at Moorfields Eye Hospital in central London. He ascertained the best time to visit was as soon as all the specialists were back from their festive breaks.