Month: March 2019

This week Ottilie had fairly major surgery. The poor little mite only went and had a bloody great tumour removed. Her surgery was on Wednesday this week, it is currently Saturday, and she is already snoozing soundly in her own bed after ‘boobie two’. She is recovering so well she was discharged three days earlier than planned. What a champ.

For the purpose of this all making sense, I am going to put it into a diary type format (like blogs were originally written if you will). That way when I waffle on for too long you can take a break and slide straight in where you left off. I have also split it into two posts as it is quite a lengthily story to tell…

25^th January

We took O to the GP to discuss her ongoing issues with constipation. For some background, Ottilie has had issues with constipation since she was about 16 months old and we regularly give her Movicol as prescribed. Amy also spoke to GP because she had been able to feel a lump on the lower right side of Ottilie’s stomach, one of Ottilie’s keyworkers had also said to me that she could feel something whilst she was trying to massage her tummy to help her poo. The GP attempted to examine O but she wasn’t keen aka having a meltdown. He said that her stomach felt fine and to come back if we had any other concerns.

8^th February

We went back and saw the same GP – had the same conversations around the constipation and the lump only this time Ottilie’s belly button had gone from the perfect ‘innie’ to the top popping out and folding over the bottom half. He began by saying ‘oh she’s growing, they change all the time etc etc’ and only when I asked if there was a possibility of an umbilical hernia did he examine her again. He agreed her belly button didn’t look quite right and agreed to refer us. To be honest we only went there for the referral.

16^th February

We were referred to the same paediatrician that had treated O for silent reflux previously as he specialises in digestive health in babies and children. We had really good conversation around bowel health and diet as he believed we could do more to help relieve O’s constipation (he wasn’t being shitty (pun intended) about it but he was quite frank about how as a society we don’t look at our diets enough when we have issues). He examined O and was quite happy that she was fit and healthy. He also couldn’t feel the lump but offered us an ultrasound for peace of mind.

18^th February

So as previously alluded to – Ottilie is not keen on being handled/restrained. Sometimes changing her nappy is like trying to put socks on an octopus and I am her mama. Getting O to lie down on a hospital bed whilst a stranger has a little prod around her stomach with a wand seemed like an impossible task. Amy laid down first and laid O on top of her – then Amy basically restrained her with her arms and legs. The sonographer did a brilliant job given the hostile circumstances – myself and the nurse failing miserably trying to distract O, Amy singing the first line of EVERY nursery rhyme before Ottilie would shout no and continue writhing around like that octopus I mentioned earlier. When we left that room, we knew that O had a mass, the sonographer was the first person who had confirmed that we had been able to feel something and we weren’t imagining it. Through the ultrasound we knew it was approximately 9cm x 6cm x 8cm. So not small. I went to work straight after and had an ugly cry to one of my mates.

After this appointment Amy made/received a lot of phone calls to hospitals/from the paediatrician. He ascertained that the mass was not from any of her digestive system but was potentially ovarian. Because of this, he now wasn’t the right man for the job but he went above and beyond to find someone who was. He answered emails out of his normal working hours and called us from home to expedite the process. Amy always has a lot of questions and he answered them with patience and kindness – he did a brilliant job of stripping out the emotion and encouraging us to take a logical thought process. Fast forward through all of that ‘admin’ and we were booked in for an MRI at The Portland in London. Cue lots of trains.

22^nd February

The MRI was booked for 12:30, so O was nil by mouth from 08:30 due to the general anaesthetic required. We hopped on the train and met our friend in the park nearby to the hospital for the ultimate distraction. By the time we got to our appointment Ottilie was ravenous and could not understand why she was being denied ‘boobie two’, which has always been on demand. O went down for the scan… We were expecting to wait an hour for the MRI to be completed but it was 2.5 hours later when the anaesthetist came and got us – I had long since abandoned my book and Amy was no longer distracted by Bob Ross and his joy of painting. The team had already told us we wouldn’t be given any results on the day but when we left there at 6pm the images were handed to us on a disc. We chose not to look.

28^th February

We met a specialist paediatric surgeon at our local hospital, who had read through the report submitted from the MRI and he had an idea of a diagnosis. He attempted to examine Ottilie, but she wasn’t feeling it (meltdown anyone?) and just wanted to finish colouring her Troll picture. He felt enough to say that it was big, and it needed to come out. We gave him the disc so he could view the images as at this point, he had not seen them – cue him running around the hospital trying to find a compatible computer because the two he had wouldn’t read the disc. He made a couple of phone calls trying to get them sent over but with no success. He spoke candidly, and although unlikely, there was a potential that the mass was malignant, he was the first person who had really eluded to that being a possibility and was thorough in his explanation of how either a benign or malignant mass would be treated.

Based on the information he had, and obviously his experience he loosely diagnosed the lump as a teratoma. Feel free to have a Google – I feel like all paths lead to cancer when you Google medical issues, so I won’t include a link. In short a teratoma is a tumour made up of varying types of tissue: muscle, skin and bone. They have been known to also have teeth and as such are sometimes referred to as ‘monster tumours’.

The surgeon was due to leave the country in 7 days so he decided he needed to pass us on to someone who would be able to do the operation ASAP and be available for the post op follow up. Ottilie had bloods taken to check for any markers that would indicate malignancy. We were told it was a five day wait on bloods. And five days is a long time to wait.

As promised, this a long one and part two is just the same. To be continued…

 

 

This is another long one but I wanted to include all the details for our friends and family. We have had an incredible amount of support but it has been difficult keeping everyone in the loop when things are emotionally challenging.

4^th March

We went back to the Portland to meet with the new surgeon, I haven’t named anyone else for privacy etc. but this surgeon is now affectionately referred to as the Big G in our household. With the emphasis on the GGGGGGGGGGGGGGGGGGG. Big G was the first person who had been able to examine Ottilie with her remaining calm and was even able to manipulate the lump from the outside, enough to know that it was now much bigger than the ultrasound indicated. He estimated it to be around 15cm in length. He was able to access the images from the MRI, and whilst you know that 15cm is the length of a small ruler, we were not prepared for seeing something of that size inside our Babe. He was also fairly certain it was on an ovary. As the bloods had not yet come back, we couldn’t be scheduled for surgery during this week. Again, we had decent conversations around a diagnosis and treatment and we left that appointment feeling much better about the whole thing.

6^th March

Ottilie’s bloods came back with no markers for malignancy, however this couldn’t and still hasn’t been ruled out until the histology (slicing/dicing/testing of the tumour once its removed) comes back. The surgery had now been scheduled for the 13^th.

8^th March

We had to meet an oncologist to discuss the surgery further and the prospect that Ottilie could go into surgery and come out not having had the tumour removed. The conversation was around the potential that the tumour could be involved with another part of her body, not just her ovary. And if this was the case they would biopsy it, stitch her back up and think about Plan B. We were also told that along with the possibility that they couldn’t remove it all, they may also need to make an incision upwards (like an upside-down T) if during surgery they couldn’t remove the tumour through a caesarean type incision.

11^th March

We went to Great Ormond Street for another ultrasound and a set of bloods. Thanks to boob and the iPad these went without incident.

12^th March

We moved into GOSH in preparation for surgery on the 13^th. We met the team of people who would be taking care of O, nurses, anaesthetist and the ward doctor. Amy set up in her little cabin bed behind a curtain and we asked if we could swap Ottilie’s cot for a bed because this kid normally sleeps on a floor bed and the cot was far too small especially when Amy needed to feed at night.

13^th and 14^th March

I came back from my hotel for 7am, and the nurses told us we would be going down to surgery at 08:30. So we just had 90 minutes to kill whilst O tried to scoop out Amy’s boobs and/or chewed on her t-shirt. Nil by mouth with a boob obsessed toddler is a challenge let me tell you. We were able to distract O with a super long shower and a splash about.

The anaesthetist came and had a chat about how he would use a ‘caudal’ which is much like an epidural but it goes into the back of the pelvis and would mean that they wouldn’t need O to be anaesthetised so deeply.

Ottilie was then given a pre-med that was described as like having a couple of gins, it would make her make much more chilled for the actual anaesthetic. She was honestly like a happy, incoherent little drunk in Amy’s arms, she shouted out ‘bubbles’ and ‘lady and cheetah’ (her fave toy figures) randomly before going into the theatre.  Amy held O as she held her own mask over her face, and was placed down on the bed, Amy found this much tougher than I did. My logical brain told me that these people were experts and she was in the best possible place for this surgery.

We had a few hours to kill and had intended on sitting in the room with Netflix, one eye on the film and the other on the clock but on the way back the porter advised that we get out for a bit of fresh air and a wander, so the time goes more quickly. We set out to a parade of local shops and stocked up on all of O’s favourite fruit and veggies, which included her fave ‘babal’ which is basil to you and I.

Around 11am when we were just unpacking all our goods, the nurse popped her head in and said O was waiting for us in recovery. We did a power walk down to recovery at the speed of two parents whose toddler had just had major surgery. As soon as Ottilie was awake she was straight on the boob, where would we be without those ay.

Everyone popped back in at intervals over the next 24 hours to check up on us, including the surgeon who described the tumour as big, hard and ugly, and definitely ovarian. Big G did an amazing job and thankfully Ottilie only has the one, 10cm, incision across her tummy with literally no bruising.

Ottilie was keen to get out of bed so we let her, she’d had one dose of morphine when she first came round. But her pain was being managed through oral ibuprofen and paracetamol, with the paracetamol going through the cannula in her foot a couple of times at night so she wasn’t woken.

We all laughed about how if it was an adult laying in that bed, they would have been laid up for two weeks but here was Ottilie sitting in the chair next to her bed like a visitor less than 24 hours later.

We did actually have a visitor, and once O had woken from her nap she was straight down on the floor playing with her little pal, watching Duggee and munching on some crisps. What a total babe.

The surgeon came back late into the day and said he was happy for us to go home, either that evening or in the morning. Quite remarkable as we were told it was a minimum of six nights in hospital including the night before, and here we were able to go home after only two nights. Big G had said all along how quickly kids bounce back…

15^th March

We were home by 3pm and Ottilie was straight back at her kitchen making tea for us all.

I guess to tidy up some of the detail I may have missed, we are incredibly fortunate that our employers provide private healthcare, and this includes Ottilie. We don’t know how long we would have waited on the NHS, but things moved incredibly quickly for us and we are so grateful for that.

We couldn’t have asked for better people looking after us all throughout the whole process, from the anaesthetist popping his head in our room to Big G’s secretary texting Amy on the morning of the surgery to wish us well and to tell us how she is in the best hands with Big G. Every person we encountered was so patient, kind and gentle with Ottilie, everything you need when your tiniest girl gang member is unwell.

The ward we were on was more like a hotel than a hospital, so it was super comfortable throughout. It meant Amy had a bed and a shower in the same room, so she never needed to be away from O. I stayed in a hotel a few minutes away, I left the hospital late and came back early after a pitstop for coffee for Amy. With that being said – all the people we encountered also work for the NHS, and GOSH is one of the best hospitals in the world so private or not I am sure everyone leaves there feeling they’ve been well looked after.

We are back tomorrow for a follow up with Big G and will get the results of the histology next week. We will keep you posted…