The sluice

Zac spends the day in and out of sleep.  He’s had a fever for the past few days so is being closely monitored by the nurses.  The staff at the hospital have all been brilliant and we have come to know a lot of the nurses well, along with the health care assistants and cleaners.  You look forward to their visits to your room, the chats that provide a bit of light relief and humour.  I do believe the NHS has its problems, exacerbated by the chronic under funding from government over the years, but the care we received from all members of the team was nothing short of world class.  So many people had a huge impact on us while we were staying with Zac and we will always remember and be grateful for them and the amazing work they do.

The days are spent alternating between lying with Zac, meetings with the team, chats with the nurses and anticipating trips to the sluice room.  The sluice room is a closed room found in hospitals that is specifically designed for the disposal of human waste.  During chemo, kidney function must be monitored, one method being to check what goes in versus what comes out.  We had to collect everything that came out (and I mean everything) into little cardboard bowls and transport them to the sluice room so everything could be measured and compared with what fluids had gone in.  You could tell when it had been a particularly busy night on the ward by the number of bowls containing various bodily secretions balanced precariously atop each other on the side.  Pity the poor soul who’s job it was to sort everything out in the morning. 

Dip

Zac is entering the post chemo dip now and his blood cell count is crashing.  Mucositis is starting and there is a lot of vomiting and diarrhoea.  Because he can’t tolerate the tube feeds anymore, he is placed on TPN again and will be solely reliant on this for his calories and nutrition.  He is on a mixture of 3 anti-sickness medicines which help to ease the vomiting somewhat.  His mouth is a mess; dry and ulcerated, and he spends most of the time awake spitting out thick, viscous saliva into a sick bowl as it’s too sore to swallow.  The red blood cell and platelet infusions start, as does the background morphine.

Sweetcorn

The day of Zac’s stem cell transplant.  Seb and I watch as the frozen bag of cells is removed carefully from it’s cryogenic container, liquid nitrogen seeping from beneath it’s lid.  After defrosting, the bag is attached to Zac’s line and the infusion is done after about 45 minutes.  One unusual side effect is that after the transplant, Zac smelt strongly of tinned sweetcorn for about 2 days afterwards.  We haven’t been able to eat the stuff since.

Thank you for the support

We had been extremely fortunate that a very kind friend had started a fundraising page for Zac not long after his surgery.  It removed a huge amount of financial stress from me and Seb, considering we hadn’t worked since Zac’s diagnosis and likely wouldn’t until some time after his treatment was finished.  It also allowed us to fund our stay in Germany.  There had been a huge amount of support on his page and we had been totally overwhelmed by the generosity and love shown by friends, family and strangers.  There was many a night I spent reading through messages of support, while Zac was sleeping, that moved me to tears and filled me with hope.  Several fundraising activities took place, from Zac’s nursery’s sponsored dinosaur stomp walk, a charity football match in Prudhoe and a fundraising night organised by my sister in the Cayman Islands.  Living in hospital means you live in a little bubble, so it was incredible to see so many people out there rooting for our boy.

On the morning of the 6th Feb, despite terrible weather conditions, many of the nursery workers along with other parents, children and some of our family members walked from the nursery to Jesmond Dene.  We were blown away seeing the amount of people who attended, and it was very emotional watching the videos and seeing pictures of everyone along the walk.

High dose chemo

The high dose chemotherapy regimen included Zac receiving a combination of carboplatin, etoposide and thiotepa over 6 days.  The stem cell transplant would take place 3 days after the chemo had finished.  The aim of this chemo is to completely obliterate rapidly dividing cells, such as cancer cells.  Unfortunately, this is a blunt tool, so it obliterates rapidly dividing healthy cells as well, such as those found in the bone marrow that go on to become red and white blood cells, and platelets.  Zac would require multiple blood and platelet transfusions and would be highly susceptible to infections as his white blood cells became non-existent.  He would be on a cocktail of drugs to mitigate the risks, including antivirals, antibiotics, antifungals and anti-sickness meds. 

One of the chemotherapy drugs, thiotepa, is secreted in the sweat and, if left, can lead to a painful, blistering rash on the skin.  For that reason we were told to bathe Zac 3 times a day and to change his clothes and bedding frequently.  The bathing initially took a lot of coaxing, he absolutely hated having a bath since the central line went in, but we found a little baby bath in the hospital that he tolerated.  We would see the return of the hyperhydration, although even more so during the thiotepa.  During the day he would often need to wee hourly and through the night we had him in nappies, aiming to change him every 2 hours.  Even so, there were many times that he would have completely soaked through the bed, resulting in multiple changes, bed disinfections and new bedding though the night.  Those nights were tough but, as we were still alternating, at least you knew you could head home the following night to sleep.  I can only imagine how brutally relentless those nights would be for parents on the ward doing it alone.

Back into battle

Zac is readmitted into the RVI to start his round of high dose chemotherapy with stem cell transplant.  We had been warned by the doctors that this would be a gruelling few weeks and whatever side effects Zac had suffered in the first round would be much more severe this time.  They hoped that he would have sufficiently recovered by the end of February to be able to get on a plane to go to Germany.

Everyone is feeling anxious, and Zac is not overly thrilled to be heading back into the hospital.  Particularly as he spends his first evening there having various tests- obligatory covid swabs (of which there were many), separate nose, throat and groin swabs, blood tests, chest x-ray and worst of all, a fresh dressing placed over his central line.  Having a plaster changed seems so trivial in the grand scheme of things but he absolutely hated it.  It would take 2 grown adults to restrain him as he thrashed about and screamed at the top of his voice.  Not sure who dreaded these episodes the most, Zac, us, or the poor nurses.

By now we were a little more clued up on chemo and what to expect from hospital life.  The rule book had already been tossed out the window, stood on and set alight.  We had the mentality of approaching each day like we were heading into battle.  As dramatic as that sounds it did help us to stay focused on that day and not think too far ahead, just getting through each day at a time.

Accepted for Proton Beam

We get to spend a couple of days at home before Zac is readmitted on Sunday to start the high dose chemo.  He’s eating a few little bits but is mainly reliant on the tube feed for his nutrition and calories.  He gets to see his grandparents and we take the chance for a little park trip.  We push Zac in the pram as he is still very weak, but he does manage a few steps in the park and he enjoys sitting to feed the ducks.  We feel incredibly lucky to be able to share some ‘normal’ family experiences together again once again, even a once considered ‘mundane’ park trip.  Although seeing him at the park, unable to walk, where previously he would run, climb and jump does bring home what an abnormal situation we are in.

In the afternoon, we receive a phone call from Gail to inform us that Zac has been accepted for Proton Beam radiotherapy, with a slight curve ball being that it will be undertaken in Germany.  ETMR tumours have a better prognosis if radiotherapy is undertaken soon after the surgery, so hearing that Zac will be able to begin this treatment as soon as his high dose chemo has finished is fantastic news. 

First NG tube

In anticipation of coming home for a few days before the start of the high dose chemo, Zac is weaned off TPN.  Due to the fact that he still has zero appetite and has lost a fair bit of weight, it is decided that he will need an NG tube.  This is a tube that goes through his nose directly into his tummy that we can use to administer his feeds as well as any medication he needs.  In the long run it would make life a little easier with regards to the medication as he always hated taking it so we would often have to pin him down and squirt it into his mouth, especially considering during the high dose chemo he would be on A LOT of medication.  That afternoon he had the tube placed.  Despite the best efforts of the amazing nurses and play specialists to distract him, we ended up having to, once again restrain him, while the tube is inserted up his nose.  There is a lot of initial retching, understandably Zac is not impressed and doesn’t speak with us for the rest of the afternoon.  By the next day however Zac has grown quite used to the tube and the little dinosaur sticker holding it in place against his cheek.  We meet with the dietician who teaches us how to administer tube feeds using a portable feeding machine at home.  It can be used through the night whilst stood in a little stand next to his bed, or during the day where it can be kept in a little rucksack that Zac could wear to allow him to move around with it on.  The rucksack became known as “mini-fishy” by Zac and the only time we tried it on his back he toppled over under the weight of it, so we ended up just hovering around him instead and picking it up to move it as he moved around. 

Trip to the park

We are allowed to take Zac for a short trip to the park while he is unhooked from his IV stand.  The stand was given the name “Fishy” by Zac, presumably because the bag of fluids attached to it resembled a bag containing a goldfish you used to win at the fun fair, before they gave much care to fish welfare.  He had been confined to his room all week, so getting to go outside for some fresh air was very exciting.  Seb was with Joseph at home and arranged to meet us in Leazes park, across the road from the hospital.  Zac was weak, so I carried him.  We all sat on a bench overlooking the lake and watched the ducks and birds as Zac fell asleep in my arms.

Hair loss

The hair starts falling out now.  On his pillow and in clumps as you stroke his head.  He itches his head and shoulders but is otherwise unconcerned.  In a show of solidarity, Seb shaves off his hair.  This did not have the desired effect and on seeing his Dad’s fresh buzz cut, Zac screams, “Someone’s eaten your hair!”

Rage

The ‘chemo rage’ starts.  Zac screams at us and lashes out, kicking, biting, and hitting.  Seb gets smacked in the face with a dinosaur tail that closely misses his eye and I have a few clumps of hair pulled from my head.  The ward sister comes in to check on us and, seeing me sat on the end of the bed in tears says to us softly, “Don’t worry, you’ll get him back.”  We quickly learn that, in hospital, anything goes.  The standards we once upheld for parenting are thrown out the window.  In the early days I had tried to maintain some sort of routine, but this only led to me feeling more frustrated and stressed.  Things definitely felt easier once I had completely surrendered to hospital life.  Want to stay up ‘til midnight watching Jurassic World?  Sure!  Eating a cream egg for breakfast?  Great!  On the subject of food, things also got a little easier knowing that Zac was receiving all his nutrition and calories while on TPN.  The removed a huge stress for us as we had been trying everything to get him to eat, most of the time he point blank refused and we could see and feel the weight dropping off him.  

Back home, briefly.

We are allowed to bring Zac home from the hospital.  The plan is that we would bring him back in a week’s time for more chemo so we are happy to be able to spend some time at home and for some family to be able to see him.  Initially, Zac is happy to be home.  He enjoys seeing his brother, grandparents and playing with his toys.  That night we attempt to give him a bath.  The central line mustn’t get wet, so we try and seal it using clingfilm as recommended by the nurses but he completely freaks out at this so we abandon this plan.  As the weekend goes on, Zac deteriorates.  He is very sleepy, grouchy, and completely loses his appetite.  On the Sunday he develops a fever so we take him back to the hospital, where he is readmitted on the ward.  When a child who is undergoing chemotherapy and has a central line fitted develops a fever, this has to result in a trip to A&E for blood cultures to rule out infection from the line.  Being so early on in his treatment, we were not yet familiar with the usual pattern played out after chemotherapy.  Unbeknown to us, he was neutropenic, meaning his white blood cells were very low, and his red blood cells and platelets were crashing too.  He was starting to develop mucositis- painful ulcers throughout his digestive tract, particularly his mouth, so it was no wonder he had gone off his food.  On the ward he was placed on IV morphine, fluids and antibiotics as well as TPN- a sort of intravenous feed to sustain him as he couldn’t tolerate anything in his mouth or tummy.

Methotrexate

So far, Zac had tolerated the treatment well.  Then came the methotrexate.  Even the name sounds bad.  It had a luminous yellow, almost nuclear look to it.  It also made his wee luminous yellow, and it stung.  Zac was placed on hyperhydration- a high volume of fluid intravenously- to help flush the methotrexate through his kidneys to try and minimise any damage to them.  What goes in must come out so he needed the toilet a lot and we would be taking him or changing his nappy almost hourly, sometimes we’d miss this through the night, and he would soak through the bed.  Again, this is something that we would become used to dealing with during the high dose chemo, but that first night dealing with the hyperhydration was a baptism of fire, especially as at the time we were sharing the bay with 3 other children and their parents, and you were conscious of not wanting to disturb them too.

Chemo begins

The first day of his first round of chemo.  For the induction round, Zac would receive 5 drugs: cisplatin, vincristine, cyclophosphamide, etoposide and methotrexate spread out of the next few weeks.  We were advised to wear gloves when changing him and taking him to the toilet, as well as being scrupulous with hand washing and infection control.

It was also the first time we met Andy, the music therapist.  Andy was a lovely man who attended the ward most Thursdays and enabled the children to have some fun making music on his various instruments.  Zac enjoyed thrashing about on his keyboard, cymbals and glockenspiel and we have a great video of us wheeling him around on his IV stand while the chemo is being dripped into him, smiling and having fun.  I asked Andy if he could play an Oasis song, when he started strumming Live Forever I sang along and laughed at the irony.  I would listen to that song on the mornings I drove into the hospital after staying at home and it always made me smile thinking of this time.

Stem cell harvest

There have been many moments over the course of Zac’s treatment where we have marvelled at modern medicine, non-more so than the day of his stem cell harvest.  5 days prior to this he had received daily injections of GCSF to boost his own body’s production of stem cells.  On the day itself, Zac was hooked up to a machine for 4.5 hours during which time blood was taken from his femoral line and passed through a centrifuge that would separate the stem cells from the blood cells.  This precious bag of straw-coloured liquid would be frozen and stored until the time came when it was needed to be infused back into Zac.  The high dose chemo would completely obliterate his bone marrow and as a result his red blood cells, white blood cells and platelets.  These stem cells would help his bone marrow to recover and start making healthy blood cells available.

The procedure went well, and they were able to collect enough stem cells in one sitting, meaning we didn’t have to go through the whole thing again the following day.  The nurses were amazing, and Zac grew very fond of one in particular who would later be the one to readminister his precious cells back into him the following month.  Another had the unenviable job of removing the vascath.  Only one of us was allowed in the room at a time so Seb waited outside and could hear Zac’s screams as I help him down tightly while the nurse pulled out the giant cannula from his thigh.  You felt sick to your stomach putting him through such ordeals but had to remind yourself of the necessary evils he would have to endure to hopefully save his life.

Wiggly

The first sight of our boy, naked in the hospital bathroom with various tubes from various holes was a brutal one. His spine was bruised, his hand cannulated and bandaged, his Hickman line dangled precariously from his chest and his femoral line hung high up on his thigh. We held it together in front of him and tried to normalise things for him as much as we could. Look, all the other children on the ward have their own ‘wigglies’ and now you’ve got one too! It is quite remarkable how children just adapt to things, and he soon became adept at manoeuvring around the ward, seemingly unperturbed by the additional baggage he was carrying.

Hickman line surgery

For a long while after the diagnosis I would wake each morning and think I’d had an awful dream.  Then the reality would dawn, and the stone swallowing feeling would return.  Zac gets admitted into the RVI on January 3rd, in preparation for his surgery on the 4th.  While under, Zac would have his Hickman line fitted, a tube that is inserted through his chest that feeds into a vein that leads to his heart.  His chemo and various other drugs would be administered through this, and it would also enable hospital staff to draw up samples of his blood easily when needed.  During surgery he would also have a lumbar puncture to check for any malignant cells in his spine, and a vascath inserted.  The vascath is essentially a giant needle in a tube that gets placed into his femoral vein just below his groin and will be where the blood for the stem cell harvest is collected from.

Being admitted onto a paediatric oncology ward is when it really hits home.  Most of the children are bald, have a feeding tube up their nose and may be hooked up to several machines.  We were entering into our new reality, and it was scary and upsetting on that first day.  With time we grew fond of the ward, it became our safety bubble, and we would end up really missing the place when it was our time to move on.

We decided early on that we would take turns doing alternate nights on the ward with Zac.  This allowed one parent to return home and see Joseph, our youngest son who’d just turned 1 and our parents, who took turns in looking after him.  The person coming home would update everyone on the day’s events and enjoy the luxury of a home cooked meal and a good night’s sleep, ready to return to the hospital in the morning feeling refreshed and able to bring some much-needed energy to Zac and the parent who had done the night shift.  We are acutely aware at how lucky we were to be able to do this- living so close to the hospital and having our parents nearby to help, as many of the parents on the ward didn’t have this option.  I can only imagine the relentless exhaustion of the single parents who were on the ward doing it all alone.

Diagnosis

Zac had recovered remarkably well following the surgery.  After 2 days he was walking around and exploring the ward whilst I dragged his little IV drip stand around with him.  His head was swollen, and he was on a steroid to help reduce the inflammation around his brain; this gave him some pretty intense mood swings and pangs of sudden hunger but generally, all things considered he was doing great.  On the topic of steroids, a lot of children on the oncology ward are prescribed them as part of their treatment regimen.  It is not uncommon to hear demands of certain foods being shouted out during the night and they can be quite specific; chicken nuggets at 2 in the morning or a roast dinner for breakfast.     

It was decided that we could go home on December 23rd, and we were happy to be able to spend Christmas day at home together.  It is a strange feeling listening to jolly Christmas songs on the radio whilst your child recovers from brain surgery.  Everyone does their best to make the ward feel festive, and there are even some gifts for the children from Santa, but it’s really not the place you want to be over Christmas.

On the 28th we are called in to discuss the histology results with Dr Gail, Zac’s lead oncologist.  She tells us they have a name for the tumour, embryonal tumour with multi-layered rosettes, or ETMR.  It is a highly aggressive, rare, stage IV malignant cancer.  It was possible to try and treat it, but it would be difficult, and they would need to act fast.  The average survival rate after 5 years was a dismal 25%.  She then outlined what treatment would be required, jotting down the key points and trying not to overwhelm us.  He would need a round of chemotherapy followed by a round of high dose chemotherapy with a stem cell transplant followed by 6 weeks of radiotherapy to his head.  Side effects would be both immediate and long term and would include nausea and vomiting, loss of appetite, mouth ulcers, hair loss and risk of infection in the former.  The latter would include hearing loss, infertility, kidney problems and risk of secondary cancers.  The side effects from the radiotherapy included cognitive impairment and learning difficulties although this wouldn’t be apparent until 2 years following treatment.  She had scheduled an appointment for the following day for us to meet with the stem cell team and Zac would need to start daily injections of GCSF to help boost his body’s production of stem cells in preparation for their harvest.  He would have a Hickman line fitted and would start chemotherapy next week.

Writing this out reminds me how lucky we were to have such a wonderful doctor in charge of Zac’s care.  I’m sure she spent her festive period coming up with a plan for Zac and pulling strings with all the members of the various teams to enable him to start his treatment so quickly.  At the time I don’t think I took a lot of the information in.  I mainly heard the word cancer and remember Seb crying next to me.  On our way to the car, we found an empty chaplain’s room and both broke down together, trying to figure out what we would say to our expectant parents who were waiting at home.

Surgery

Zac is in surgery for 3 hours to remove the tumour in his head.  Seb and I pace around the hospital and try to keep our minds occupied.  In the parents’ room on the ward we are staying, a lovely woman approaches us and asks how our little boy is doing.  She is the first parent we speak and our first experience of how having a conversation with someone going through something similar can be so powerful.  We tell her about Zac and ask after her son.  She tells us she has been caring for him on her own at the hospital for the past few months.  He has stage 4 brain cancer that has spread and has undergone multiple surgeries and will require several rounds of high dose chemo.  Through all this she seems calm and positive.  We are in awe of her; if she is getting through all this alone and still able to stop, chat and smile then we can surely find the strength too.  I still think of her and wonder how she and her son are doing.

We get the call that Zac is out of surgery.  The joy in seeing him conscious and moving about is massive and we quickly rush to his bedside.  This feeling suddenly dissipates when we see the Surgeon’s face.  “I’ve removed it all,” he tells us, “But I’ve had to be quite aggressive and remove a margin of healthy brain, I’m sorry if I’ve left him with a deficit.  I’ve never seen this type of tumour before, but I didn’t like the look of it.  We will have to wait for the histology report to find out what type of tumour it is.”  We knew then it wouldn’t be good news.  My legs buckled and I almost fainted.  On our way to the parent’s room, I let out a deep, guttural scream.  We held onto each other and cried.

Zac spent the night on PICU where he was looked after by a fantastic nurse.  Parents aren’t meant to stay overnight on PICU, but they allowed one of us of to sit by his bedside through the night.  The ward sister found a spare hospital bed on a separate ward, meaning Seb and I could take it in shifts to be with Zac while the other tried to get some sleep.  It was a rough night, but we were amazed in the morning when Zac sat up in bed and asked for some of his favourite hospital custard.  He sat there, playing with his dinosaurs, eating his snacks as the surgeon came in to check on him.  Seb and I took it in shifts to be at his bedside as he remained on PICU.  One of the doctors from the oncology team, who would go on to become Zac’s lead oncologist, came to sit with me on one occasion.  She was so kind and giving of her time.  “It’s rare, so it must be bad,” I said.  She replied, “You have to hope for the best but also prepare for the worst.”  And so, we prepared.  Allowing ourselves to think and discuss possibilities that previously my brain would not have allowed.

It’s not a normal scan

Not long after his 3rd birthday, we noticed a sharp deterioration in Zac’s speech.  All of a sudden, he would be unable to pronounce certain words and his speech became increasingly slurred.  He had experienced a seizure in the summer, and we took him to A&E where he was checked over and it was agreed we would keep a close eye on things as he appeared otherwise fit and well.  The sudden change in speech led to another trip to A&E where a wonderful doctor named Mark scheduled an urgent MRI and EEG (brain recording activity test) for that week.

Zac and I arrived early in the morning, being nil by mouth in anticipation of the general anaesthetic he would require for the MRI.  We were told the MRI was scheduled for 2pm and that the EEG would be first.  Crap, I thought, I’m going to have to keep a very active 3-year-old boy entertained and distracted all day with no food.  Little did I know then how accustomed we would become in doing this over the coming months.  We had a great time waiting for the tests, reading, doing puzzles, and opening some early Christmas presents.  Dr Mark checked in on us and was happy to see Zac doing so well.  The EEG was fine and then it was time for the MRI.  I held Zac while the expert anaesthetist cannulated his tiny vein, administered the anaesthetic and within seconds he was out.  I cried leaving him, but the nurses reassured me and told me they’d let me know as soon as he was done.

Time passed slowly and then went on, and on, and on.  Then I heard Zac crying from the other side of the door and the anaesthetist entered the room, rolling Zac in on his little hospital bed.  He looked serious.  “Call your Husband,” he said. “It’s not a normal scan.” Even writing those words I get the feeling like I’ve swallowed a sack of stones.  The rest of that day is a blur: calling Seb, him rushing to the hospital, various doctors flooding into the room.  We meet the surgeon and the oncologists, and they tell us there’s a mass in Zac’s brain, they don’t know what it is but we need to get it out.  We are in complete shock but utterly grateful for this team of people here to fix him and guide us through.  The surgery is scheduled for Monday.