Uncertainty

Over the past 6 months, we have been so fortunate to enjoy a more normal family life. Zac has been getting stronger, is more able to enjoy activities and we have seen, on the whole, a return of his pre-treatment personality. He had a clear scan in April and his consultant was so happy to see how well he has been doing, that she didn’t need to see him until his next scan, scheduled 3 months later. We breathed a sigh of relief and tentatively started to believe. Plans were made for Zac starting school in September. We made the decision to move house, relocating to the Northumberland countryside.

The next scan was scheduled for August 3rd. Zac went down for his General Anaesthetic so calmly and smoothly, a dab hand at this by now. During the hour we waited, we walked to get coffee and food (nobody eats the morning of the GA when Zac is nil by mouth) and we are reminded of the time we lived here for two months. So many memories that get supressed bubble to the surface once back in the hospital environment. Once Zac had recovered from the GA and eaten, we were discharged back home, we would return the following day for the results.

The day of the scan/results never gets easier. You are tense, irritable, agitated (well, I am). We waited to see Zac’s consultant. It was an unusually long wait. Anxiety levels crept higher. On entering the room, we knew something was wrong. A serious face had replaced the usual jovial greeting. “There is an irregularity on the scan. I don’t know what it is, but I am concerned. I need to get a second opinion from the radiologist by day’s end.” I felt my stomach sink to the floor and glanced at Seb who was on the verge of tears. We kept it together, thanked her and waited for the call that afternoon. When it came, it offered more uncertainty, the radiologist couldn’t confirm if it was the tumour recurring or something else, but they and our consultant were both concerned. We would have to wait until Tuesday when the multidisciplinary team would meet to discuss.

We tried to keep ourselves busy over the weekend and do as many fun activities with the boys as we could. But in all honesty, we were preparing for, and expecting, the worst of news. Tuesday finally arrived and we received the call. The neuroradiologist is fairly certain the lesion is not ETMR recurrence, it may be post Proton damage in the area of the tumour. The team had agreed that, presently, there was no need for any urgent surgery and advised another MRI scan in 6 weeks time. We felt absolutely elated to receive this news after the plunging despair following Friday’s results, expecting to be told the tumour was back today.

It has certainly brought us back down to reality with a bump, reminding us of the ongoing challenges ahead for Zac. But also reminding us to be thankful. Thankful that we have been able to enjoy a relatively normal life these past six months, thankful for enjoying so many moments with our boys and seeing their relationship develop. A reminder that the road ahead may still be bumpy, but to always look back and see how far Zac has come.

Reflections

Writing this blog has helped me reflect on, and process, all that has happened over the past year.  If anyone reading has found it helpful in any way; whether to better understand what happens following a child’s cancer diagnosis, or finding some solace if you have been through something similar, then that is a bonus.

So, where are we now?  I can say that, at this moment in time, Zac is doing incredibly well.  There has been a big improvement in his behaviour 6 months on from finishing treatment.  He celebrated his 4th birthday in November with a big party full of family and friends; a milestone we didn’t know whether he would reach at the start of the year.  His most recent scan, just a couple of weeks ago, was also all clear; incredible.

Looking forward, he will have scans every 3 months over the next year, moving to scans every 6 months after 2 years.  He will continue to take epilepsy medication to keep any seizures at bay; at this time, it’s uncertain how long he will need to take it for as he may develop epilepsy as a result of the radiotherapy to his brain.  We will have to wait and see what other side effects develop over the next year, but for now we couldn’t be happier with how he is doing and being able to make the most of spending time together, making memories.

I will continue adding to this blog and would be happy to offer any support to families going through something similar, so feel free to reach out.  And finally a huge thank you to all the doctors, nurses, cleaners and HCAs at the RVI and the WPE; as well as all our family, friends and strangers who supported our family throughout Zac’s treatment; you really have been life savers.

End of the Diary

The second post-treatment MRI looms.  Zac has been doing well and is now attending nursery 2 days a week.  Once again, the scanxiety starts to build.  With ETMR tumours, due to their aggressive nature, many children will unfortunately relapse and the average time for this to occur is 9-12 months following surgery.  Zac is now 9 months on from surgery.

We receive the call from our oncologist the following morning that the scan looks clear.  Once again, we are flooded with relief and can pause the scanxiety until the next one in December.

And this is where the diary ends.

Help

Zac was doing well with his recovery; getting physically stronger and able to do more activities.  Personally, I was starting to struggle myself.  Often I would experience low moods, lack the enjoyment I felt I should have when spending time with the children, and would be irritable and quick to snap.  On one occasion I took the boys to a local park to meet up with a friend and her children.  Zac was acting up, running off and not listening; not uncommon for a 3-year-old.  I couldn’t cope and just burst into tears.  My friend helped, we got the kids back to the car and on the walk home we had a good chat.  I decided I would make an appointment to speak with my GP.  There were many occasions during Zac’s treatment that people commented, “Oh, you’re so strong,” or, “you’re coping so well”.  In reality during treatment your brain puts the blinkers on and your sole focus is just getting through that particular stage.  I think once the treatment had finished, and we’d returned home, I started to process everything that had happened over the past 6 months.

I spoke with my GP who was very kind and understanding, and she said I had a lot of symptoms of depression.  We spoke about talking therapies and I agreed to start taking an antidepressant.  Just having this conversation and asking for help made me feel better, it was the beginning of the process in healing my own mind.

Central line out

Zac had been placed on the cancellation surgery list to have his central line removed.  On July 5th we received a phone call to tell us there had been a cancellation on the 7th, so could we bring him along to the hospital then.  This was fantastic news for us as having a central line in meant weekly appointments as well as an increased risk of infection; if he every developed a temperature we would be required to take him to a&e for blood cultures to rule out infection around the line.  With the line gone, Zac could also enjoy more activities; swimming and being boisterous without worrying about yanking the line out, but most excitingly of us, he could have his first proper bath of the year!

We were incredibly lucky to be offered this appointment, as many children must wait around a year to get their line removed.  Once it had been removed, we also started to think about gradually returning Zac to nursery as now a temperature would not necessitate a trip to A&E.  It would be another step for Zac and for us to get a bit more normality back in our lives.

MRI post treatment

We were starting to find our rhythm with life at home again.  I had started taking Zac to a few little playgroups and doing some of the activities he had enjoyed before his diagnosis.  It was great to see him around other children again, although being away from kids his own for so long did have an impact.  He was more withdrawn and shy than what he used to be and wasn’t at all keen on sharing.  There were still good and bad days, but the really bad days gradually became fewer.

It was also the first MRI scan following the end of his treatment.  The build up to scan day is tense, it never gets any easier and the ‘scanxiety’ is real.  In the days before you become snappy, on edge and your mind wanders to imagine all the different scenarios dependant on the result.  Your sleep is disturbed as your dreams are haunted by past experiences and future possibilities.

We take him along for his general anaesthetic and kiss him goodbye as he goes under.  The nurse comments how calm we seem leaving him, and then understands why when we tell her he’s had almost 40 general anaesthetics in the past 6 months.  His MRI completed; we are called to get him from recovery.  The oncologist informs us, mercifully quickly later that day, that the scan looks clear, and we are beyond relieved.  As the adrenaline seeps away and the tension lifts, everyone is exhausted but incredibly grateful to have come this far.

The month of May saw us settling back into life at home and trying to find our new normal.  We saw some family members and a couple of Zac’s friends but were very conscious of not overwhelming him.  He was very tired following the radiotherapy and still vulnerable from having a weakened immune system.  We had been told that his immune system would gradually start to recover 3 months after the chemotherapy and that at 6 months he would need to be reimmunized against all the illnesses that children receive in their baby and preschool vaccines.  His behaviour was unpredictable at the time and mood swings and aggressive outbursts would happen frequently.  It was always a fine balance between daily activities to keep him occupied and trying not to overdo it.

We had our first check-up appointment at the RVI with Dr Gail since returning from Germany.  It felt very strange being back at the hospital as an outpatient, you had that same stomach-churning feeling entering the ward again.  It was nice to see some of the faces of the nurses and doctors who had cared for him at the start of the year.  Everyone was happy to see how he was doing.  The last time we were here, he was most likely the sickest child on the ward.  Now we were back, and the doctors and nurses had new patients to attend to, making us feel for all those families having their worlds upended.

Zac would see the oncology team every 2 weeks and would also be visited by the community nurses at home to flush his central line and change the dressings.  Zac had suffered some moderate hearing loss following the chemotherapy so this would need to be monitored with 3 monthly hearing tests.  There was also a psychologist who specialised in paediatric oncology patients who was incredibly helpful and supportive, as well as an occupational therapist who gave us some good advice on dealing with the behavioural challenges.

Back home

Today we fly back home to the UK.  As we head off in our taxi on our way to the airport, we wave goodbye to Sue and Keith and the house we have lived in for the past 2 months and feel quite sad to be leaving.  Although very happy that Zac has now finished active treatment, we will once again be entering a transition period where we must readjust to life back at home.  He will see his oncologist for regular check-ups and will have 3 monthly MRIs for the next 2 years, but it does feel strange that he's no longer having any active treatment.  He’s had everything he can have now, so now it’s in the hands of fate, and we just must watch and wait.

The journey home was less traumatic than the journey there, although Zac has some more energy so there’s more chair kicking and shouting!  Landing in Newcastle, getting in the airport, seeing so many people bustling about, all the traffic, feels so surreal.  This year we have lived in our little bubble and now we are emerging, blinking and weary into the big wide world.  Initially our house doesn’t feel like our home anymore, all the stuff inside doesn’t feel like ours.  Seeing all Zac’s old clothes and toys makes us remember the time before he was diagnosed and there is a definite sense of before and after.  This is our after, and the past few months have changed us all.

Proton, done.

Today marks the last day at the WPE and Zac’s final session of proton.  I take him in for his appointment and, once recovered, he is allowed to ring the end of treatment bell.  Seb, Joseph, Sue, and Keith are all allowed in to watch his big moment and the hospital staff gather round to applaud.  All the emotions are felt as we help him climb the little step ladder and then hear him clang that bell.

We are so proud of him and so pleased that he has finished treatment.  He has been through so much and, even though periods have been incredibly difficult, he has adapted to so many changes and we have all made it through together.  After ringing the bell, we watch as he kicks a football around with his little brother in the play area of the waiting room and then head back to the house for celebratory cake.

End of the NG tube

Seb and I take Zac to Duisburg Zoo.  As our time in Germany comes to an end, we want to take advantage of some of the attractions here while we can.  He loved seeing all the animals, particularly the dolphin show, which he watches in amazement. 

His NG tube had also come out the previous night and we made the decision not to have it replaced.  He had been doing better with his food and was generally good at taking his medication, so we felt a bit less reliant on it.  It was also lovely to be able to see his whole face and to kiss both cheeks!

Recall

Week 5 of proton now.  So far, Zac has tolerated the treatment well, being mostly happy to go for his magic sleeps.  We had been advised by the doctors to expect to see some of the immediate side effects from the radiotherapy kicking in now- mainly tiredness, a reduction in appetite and some redness or irritation around the scalp from where the radiation is targeted.  The long-term effects, such as cognitive or learning problems, won’t be seen until at least 2 years following the end of treatment.

There has also been a deterioration in his speech at times, something that always puts us on edge.  We get in touch with the oncologist back home, who explains he is likely experiencing something known as recall.  This is when a child can show some of the symptoms that led to the initial diagnosis, in Zac’s case slurred speech and a change in behaviour and is because there is still inflammation and a ‘defect’ in the part of the brain where the tumour was removed.  During normal, healthy times, the body can compensate for this deficit, however if the child is very tired or unwell, it cannot, leading to the old symptoms recurring.  It is also worth noting that recurrence of symptoms can also be a sign of relapse, so these times can be very nerve-wracking.

Routine

The start of the third week of proton.  Everyone is starting to settle into the new routine now and adjusting to life in Germany.  Zac is getting physically stronger now and his appetite is picking up.  He is still very fussy around food, and we are still topping up his calories with the tube feed overnight, but there are definite signs of improvement.  On the days of his treatment, he must be nil by mouth 6 hours before the general anaesthetic, meaning one of us is tasked with stopping the feed and detaching the wire around 2/3am.  He is also starting to play for short periods on his own now, previously he would have needed me or Seb to be with him the whole time.  I suppose he had become used to this during the time at the RVI and understandable he would crave more one on one attention during the time, nevertheless, getting moments of independent play certainly made our lives a little easier.

A trip to the park in Germany

Seb takes Zac for his appointment, and I stay home with Joseph.  The appointment goes smoothly, and the boys are back home early.  Zac is having a good day so far and doesn’t seem too tired after the treatment, so we decide to try for a trip to the park.  We agree to take Zac on our own, leaving Joseph with Sue and Keith, as we’re not sure how the trip will go, expecting we may need to make a swift exit if it ends up being too much.  It ended up being a wonderful experience.  Zac being around other children, doing normal kid stuff; running, climbing, exploring.  Seeing the joy on his face as he slid down the highest slide he could find, melting away all tension we had been feeling over the past few weeks. 

Proton begins

The first day of proton.  I always find the build up to treatment difficult.  You’re in a strange limbo period where you have no focus, rather just passing through each day as you wait impatiently for things to get going again.  With this lack of focus, you’re mind starts to wonder and you get drawn away from being ‘in the moment’, something that helps keep the anxieties at bay.

The first day of radiotherapy marked the beginning of the final chapter of Zac’s treatment.  The plan was that, during the week, we would alternate between me and Seb in taking Zac to the WPE hospital for his appointment.  He would need to be nil by mouth in preparation for his general anaesthetic, so the night before we would make up a little lunchbox for him to have on awakening.  As soon as he’d come around from the anaesthetic and was feeling ok, we were free to bring him home. 

The German doctors and nurses were great.  They would make a fuss over Zac, allowing him to sit in the ‘spaceship’ (hospital bed) and press the special button for his ‘magic sleep’, which would send him off within seconds.  Once the treatment was over, we would be called down to sit with him so that he would wake up and see us, as if we’d never left his side.

Mood swings

Everyone is starting to settle into their new routine a bit more now.  Zac has had a few planning appointments at the WPE including one for scans and for the fabrication of his radiation mask.  This is a plastic mesh that is moulded onto his face and will be worn during treatment to help ensure the radiation is aimed directly where it needs to go.

Zac is still recovering following the chemo so is still weak and not eating much.  We were told chemo can affect the taste buds; one noticeable food kids tend to go off being chocolate.  He spends most of the time resting, watching tv, and playing for short bursts.  His moods are unpredictable and dealing with the aggressive outbursts is often challenging and upsetting.  In hindsight these behaviours were almost certainly exacerbated by tiredness from his body still recovering from the chemo.  At the time I did wonder if we’d ever get the ‘old’ Zac back and almost grieve for the child he was before the tumour.   Over the coming months, the tantrums and mood swings would lessen, we would have good days and bad days, and gradually the good days started to outweigh the bad days.  But it would take a lot of time and a lot of patience.

Bye bye safety net

Zac spends the night at the hospital with Seb and is discharged the following day.  It is great to see him reunited with his brother, and to have everyone home together.  It is also the start of a steep learning curve for us, without the safety net of the hospital staff, and being responsible for administering copious amounts of medication throughout the day.  Having Sue and Keith there to help with Joseph and running the house is a huge help as the transition from hospital to home life has been quite overwhelming.  On one night, I forget to give Zac his night-time dose of anti-sickness medication and he wakes during the night to vomit all over his bed.  Seb and I argue about putting together a new tube feed and in between that, cleaning Zac and changing the bed sheets I accidentally give double the dose of medication.  Cue a frantic phone call to the RVI at 4am, where a very understanding ward nurse reassures me it’ll be fine.  Just an example of how lack of sleep, heightened emotions and trying to adapt to a new environment and routine was so challenging in those early days.

Germany here we come

We get the green light to go to Germany.  I spend the previous afternoon packing everything we’ll need over the next 2 months, as well as boxes of tube feed, an insane amount of medication and it’s accompanying paraphernalia.  The doctors and nurses all come to wave us off and I feel weirdly sad and emotional to be leaving the ward.  We are leaving the safety net of our hospital room and transitioning onto the next treatment phase. 

Navigating the airport with a mountain of luggage, medical supplies and 2 children that can’t walk is no mean feat.  Emotions are strained and stress levels are high, I find myself bursting into tears going through security.  We finally make it to the gate where everyone has a chance to sit down and rest.  As we begin to board the plane I stand up whilst still holding Zac, unaware that I am stood on the wire connecting his NG tube to the feed machine.  The plaster rips off his face and the whole NG tube comes flying out of his nose.  Now we have no way of administering his feeds or medication, I feel utterly awful, but try to keep it together in front of Zac.  On the plane, a kind lady sitting a few rows down takes pity on us and sends us some bottled water and snacks which is greatly appreciated.

On landing, a taxi takes us to the house we will be staying at.  Seb’s parents have made the decision to travel to Germany too so they can support us; they arrive at the house shortly before we do and then promptly take Seb and Zac to the hospital, where Zac is admitted.  That night I sit in the kitchen with Sue and Keith, eating frozen pizza that tastes like the best meal in the world, and reflect upon what an utter whirlwind of a day that was.

Pre-flight worries

Zac continues to improve but we are all still a little anxious if he will be well enough to travel in 3 days.  He’s still having diarrhoea and is unable to tolerate any food or liquid in his tummy so is still receiving 100% TPN.  The dietician comes up with a plan to gradually introduce small amounts of feed through his NG tube whilst slowly reducing the amount of TPN he is receiving; the main worry at this stage is dehydration during the flight if he is not able to tolerate any liquids.  The doctors have advised us that Zac will likely have to go straight to the airport from the RVI and then straight into the WPE hospital upon landing in Germany. 

Light at the end of the tunnel

Starting to see some glimmers of hope as Zac’s neutrophils (white blood cells) are slowly starting to pick up.  He’s been placed on IV ketamine along with the morphine, which is helping more with the pain now.  So much so that he sits up in bed for the first time in seemingly forever and asks to play on the iPad.  His sats start stabilising, his temperature starts to come down and he no longer needs his oxygen mask. Zac eats his first food in weeks, a Twister ice lolly.

Vulnerable

Seb had a rough night with Zac.  There was talk about transferring him to intensive care as his numbers weren’t looking good.  His temperature was over 40 and not responding well to paracetamol, his blood oxygen was low, so he was placed on an oxygen mask, and his pulse rate was high, around 215 bpm.  Weirdly I have a dream around 5am at home that Zac is on an oxygen mask.  When I wake up and check my phone, I ask Sue and Keith to come over early so I can head straight to the hospital.  By the time I arrive, his sats have settled down somewhat, although he still has a fever and is requiring oxygen.  The doctors want to run some tests to check for any infections in his lungs or kidneys, including a CT scan and an ultrasound.  It is not an easy watch as we move Zac from his dark hospital room to the stark bright light of the radiology ward, still on his bed and attached to various machines.  His skin is red and peeling, his lips are scabbed and ulcerated, and his mouth is full of thick mucous he keeps trying to spit up.  Understandably, Zac is not particularly compliant for the tests, but the radiographer manages to get what he needs, reassuring us there is no infection but confirming that there is a lot of colitis; inflammation throughout his gut, explaining the tummy pain and diarrhoea.  We intensely wish the next week away and wait anxiously for his little body to start fighting back.  He is still receiving regular blood transfusions that helps maintain his red blood cell and platelet count.  You can’t receive a white blood cell transfusion, so his immune system is pretty much non existent until the stem cells start to work their magic and his own bone marrow starts producing white cells again.  These times are tense as he is so vulnerable right now and the risk of infection is massive.