Day 540: An Unusual Lumbar Puncture

Driving to Oxford is not an unusual experience for us. Since Bilbo was diagnosed we’ve driven there 41 times. In total we’ve driven 3690 miles backwards and forwards.

But today there were a couple of things that were very different for his 15th lumbar puncture. First of all it was all a bit last minute, our trips to Oxford are normally carefully planned out and scheduled in advance. Second of all it was the first time any of us had been in a car longer than 10mins in the last 6 weeks, the first time we’d been out of Milton Keynes – been anywhere.

The Last 6 Weeks

The last 6 weeks have been anything but normal for ANYONE.

I thought I would have been writing more, but weirdly i’ve not felt like writing at all. It wasn’t easy writing Day 529: Grief through this post I can see that our loss of control was causing additional stress. When Bilbo was first diagnosed I found writing helped with the stress, it helped me to order my thoughts and make sense of the new world we were in.

But during these strange times, writing doesn’t make me feel better. And what I have come to realise is that during Bilbo’s treatment we have milestones to tick off. I can and do use those milestones to frame my thinking to help us focus. What we have now is an arbitrary 12 week time frame, but no one really knows what happens after the 12 weeks. NONE of us really know when life will return to normal or if it even will.

Isolation

We are coping – isolation isn’t new to us. We have a good set up to be able to cope with shutting out the world, for a start we have my mum with us which is an extra pair of hands. In fact this is a luxury that many don’t have right now in the midst of trying to juggle home schooling and work. And we’re incredibly grateful, plus the boys LOVE Nanny school.

We’re are also pretty creative, i’ve definitely inherited this from my mum. What this means is we’re pretty good at coming up with ways to amuse ourselves.

In the last 6 weeks we’ve camped out in the playhouse, we’ve made more YouTube videos.

We’re master bakers, we’ve crafted, we’ve set up the paddling pool, new plants have gone into the garden, Bilbo is working hard on the school reading challenge. Most Wednesdays we zoom with Bilbo and Harrison’s friends.

We held a driveway sale for The Henry Allen Trust. We’ve been busy in our little bubble.

How’s Bilbo?

Bilbo is doing really well. In the early days he was struggling with missing his friends. This remains a concern, one we share with other parents.

Bilbo is now in cycle 4 of maintenance (leaving us 7 more to go) his medicine is all pretty stable – touchwood. The the only thing we’ve been anxious about are visits to the hospital for the lumbar puncture. And for Bilbo today was one of the days we had to make a very unusual trip to the hospital.

Lumbar Puncture

Bilbo has had a lumbar puncture 15 times so far over the last 540 days. Going into Oxford on a Wednesday, having sleepy medicine, chemo in his spine, waking up and going home is all part of our routine every 12 weeks.

The first time we experienced having his lumbar puncuture and “the list” I remember it flawed me. Largely because I couldn’t believe that all these children our babies were all part of a human conveyor belt. It is like a well oiled machine everyone has their role, their place and it is pretty seamless.

We arrive early, Bilbo normally makes a beeline for the playroom. Our assigned nurse comes and does his observations these include his temperature, weight, blood pressure and pulse check.

Then we are seen by the doctor who will check in how Bilbo is feeling. We can talk about any concerns we have, ask questions and Bilbo is examined.

Next we meet the anaesthetist who asks us lots of question about Bilbo when did he last eat (always the night before) when did he last have water (normally with his medicine before we leave the house) does he have any wobbly teeth?

The List

Then we wait for our turn on “the list” and the reason it is called “The List” is because there will be a number of children who need to have a lumbar puncture and a list is created. The children are placed on the list in various orders.

The list is generally youngest to oldest, children with special requirements can be bumped up the list, being on on steroids is one of those priorities if you want to know why read my previous blog: 30 Days of Cancer. So you await your turn on the list either in Day Care or the playroom.

Once it is Bilbo’s turn, we are called to the treatment room. This room is on the Kamran ward and when we walk in we’re met with familiar faces in a familiar space. I go with him, Bilbo used to sit on my lap when it was sleepy medicine in his wiggle then he’d be lifted onto the trolley bed. But now he lays on the bed and I hold his hand whilst they give him gas, once he’s asleep I leave the room and Rich and I wait for him to come back.

During the lumbar puncture Bilbo has chemo pushed into his spine with a needle, whilst he is asleep they put a cannula in just in case there are any complications from the anaesthetic. We’re grateful this is done whilst he is asleep and sometimes they will take blood or do other tests.

Then he comes back onto the ward. We wait for him to come round and once he’s had some water and food, his cannula is removed and we’re on our way.

An Unusual List

And so today we had to experience the list under very different circumstances. Covid-19 has huge implications for a ward full of high risk children and I am incredibly grateful for the careful planning involved in keeping our babies safe.

There were a lot of unknowns about today, not least because we weren’t sure it was going to happen at all. The list process was changed a few weeks ago and social distancing needs to be adhered to so keeping numbers smaller in day care is important for everyone’s safety.

We also didn’t know if Bilbo was going to be able to have gas or would need to have a cannula. They had already told us that his lumbar puncture wouldn’t be on the ward, it would be in theatre. This meant we weren’t sure if I would be able to go with Bilbo down to theatre.

We were only allowed one of us on the ward, so poor Rich pulled the short straw and had to go wait in the car.

Anxiety

As we left Milton Keynes and I messaged our Bilbo update whatsapp group I felt sick. We had decided to not mask up and wear gloves. I knew that the part of the hospital we were going to was extremely quiet. Not touching anything and keeping our hands clean seemed like a better strategy.

But I was also worried about Bilbo. Visits to Oxford can be so unpredictable. We don’t go that often anymore and sometimes Bilbo can be unphased but other times he can act out, which is normally a sign he’s worried or anxious. He reacts differently after anaesthetic, sometimes he wakes up and is happy other times he is very emotional or angry.

I had no idea how he would react to the new arrangement. The familiar smiling faces replaced with face masks and in theatre a doctor in full “darth vadar” mask.

We talked about it in the car and hoped for the best.

Getting Prepared

Throughout each process the nurses, our doctor and the anaesthetist walked us through what would happen at each stage. Sheila the wonderful play assistant was on hand to accompany us too. Every part of the process had been carefully thought out and explained to us.

We agreed that Bilbo would be given a pre-med, Bilbo has never had one of these before. They wanted to try and help Bilbo relax, he wasn’t too happy about having it. I held him tight and could feel his heart thumping faster and faster. He was asking what does it taste like? I couldn’t answer so I told him it tasted like space.

Bilbo later informed me it tasted like a dirty wall. “How do you know what a dirty wall tastes like?” Bilbo said, “because I’ve licked one” I’m pretty sure the medicine was kicking in.

Lumbar Puncture Time

I accompanied Bilbo down to theatre which put my mind at rest, Bilbo wasn’t phased at all. He even said, “I thought you couldn’t come with me”

We were met by the team outside the theatre. Once they were ready for him, the doors opened Darth Vader greeted us and it was time for me to say goodbye.

Leaving him doesn’t phase me as much anymore, I know he’s in safe hands but I couldn’t help but worry, I was worried about how he was feeling alone in that scary room without me.

How the hell is this kid so brave? How are all the kids so bloody brave? Why is this bullshit cancer still part of our life? I don’t often dwell on us being a cancer family these days – what is the point? we are and we’re dealing with it. But today felt like one of those days where it just feels a little more real than normal.

Wakey Wakey

Bilbo was back in no time at all. And then the mammoth task of trying to wake him up begun. Since Bilbo has been having the gas, he is a lot harder to wake up. Today with the additional pre-med he was in the deepest sleep. Every tactic we normally use to wake him – failed. We got him awake he fell back into a slumber. I tickled his nose, his back, ruffled his hair, blew in his face – the boy didn’t want to wake up!

My little sleepy head finally came round, the promise of seeing daddy and getting home to Harrison was enough to get him to stay awake.

And then we were on our way home.

All Done For 12 Weeks

We won’t be back to Oxford until July, it is a relief. I hope we took enough precautions. The next 14 days will determine if we were exposed. And I really hope that our next visit will be a little more normal and little less unusual.

Thank You

Our cancer journey has always left us feeling incredibly grateful for the NHS and today was another reminder of just how lucky we are. The team today took every precaution to make today as easy on Bilbo as possible – the care we were given was world class. To every doctor, nurse, play assistant, cleaner, porter, anaesthetist the list goes on – we see you and we are grateful THANK YOU!