Where’s the corner?

T+45

I was woken by the sound of my phone announcing a text from Dan this morning at 6.15. It was with hesitation that I read it…what was he messaging so early to tell me? It could be good news, the rash was better, things were improving? Or maybe that things were worse? I decided I had to just face it so I opened it. It was thankfully not about Herbie himself, it was about alarms on pumps going of and Dan bit being able to sleep despite being exhausted due to the noise.

Kitty had woken with a high temperature in the night and continued to have one this morning so I quickly sorted out her staying home and as soon as the other two were safely dropped to school I headed back to Great Ormond Street. The journey was an easy one in terms of traffic and I made excellent time but all the way there I was plagued by thoughts of how Herbie would be today and worries about how long this whole episode would take to resolve.

I called Dan as I arrived in Judd Street as usual and he gave nothing away in his voice but when he said Herbie was with Helen the teacher I knew he couldn’t be as bad as I had anticipated. Dan and I met in the Lagoon and he filled me in telling me that they had slept in after the initial early start, dreaded NPA and finger prick. On waking they had a bath, and applied the stronger cream to the rash that was a little itchy. Dan felt it was improving though although he told me to brace myself as still looks pretty awful.

I’m glad he warned me as it would have been a bit of a shock! He really was very rashy. Helen left saying that as of tomorrow Herbie would have a new teacher, Jess, as she had an ex pupil back who was demanding he had her. Herbie will be sad to say goodbye to her I’m sure. He was on great form and I was so happy to see him behaving normally despite the rash.

We didn’t get out today but thankfully he didn’t notice. He had a lovely FaceTime with Lily and Sam when they finished school. It really does lift his spirits and they are the only two he will happily FaceTime as he moans usually that people are interrupting his games/programmes!

Facetiming whilst nurse Sufi does meds

He had a lovely book from Cherry Class in his school, full of Superhero stories that they had written and illustrated. The most exciting thing was the new superhero outfit that they sent for Dog dog! Herbie was thrilled (and I did notice Dog Dog looking a bit smug too behind the mask!)

Super Dog Dog to the rescue

There was also some fab Moshi clay buddies and Moshi squishys that were sent by Jo and the gang.

We were a little miffed to learn that the doctor had been whilst the teacher was in with Herbie so we had missed her as we had questions! Especially when the blood results came in!

HB 92 (brilliant, almost back in normal range without transfusions)
WCC 12.49
Neutrophils 10.39
Lymphocytes 0.75
Platelets 136! ( go platelet making boy)
CRP 13 (yeehah )

Urea 5.8
Creatinine 29

The neutrophils are still rising as we were told they would with this extra steroid but I was concerned that the lymphocytes that they are trying to harness are also going up. Apparently the doctor was happy with the bloods.

Dan was thinking about heading back when Herbie’s skin started looking redder and he became very upset and agitated and said he was itchy all over. Piriton was given but there was no change, the stronger cream soothed it temporarily but soon he was violently scratching again. It was all a bit upsetting. Finally just after Dan left the hospital Herb was given the stronger Piritonesque iv that also aids sleep.
He fell asleep, but on my bed but the rash continued to look fiery and he was itching in his sleep.
He didn’t sleep for long, waking upset and itchy and demanding a dressing change. Ella, his nurse again tonight, obliged but couldn’t give anything more for the itching.
Finally he calmed down and I watched lots of the redness fade. He started running around the room! He ate a packet of crisps and then iced gems and drank another 280ml of drink! (Fluid target exceeded then! ) finally he sang along, whilst wearing headphones, to Moshi songs and was happy as anything!

He’s still sitting here as I type, with trusty Dog Dog (The Dog wonder) by his side.

Ella was saying how Herbie sailed through the first 6 weeks making transplant look quite easy. How they all expected him to be gone a few weeks back and then this little blip has gone on, just need to turn the corner and it’s home.
I’m still waiting to find that corner so that I can turn it! Maybe tomorrow, keep plodding onwards…

An itch that just won’t go.

T+44

Another distance blog today and one that I don’t relish writing. It’s not been a settled day in Room 2 of Robin Ward and the fact that I haven’t been there to support my boys makes it even harder to write about.

Dan phoned this morning to say that it was an unsettled night as the itching of the rash had become become pretty unbearable for our poor Small. Piriton was having no effect and the cream that started off being quite soothing wasn’t helping much (plus you can only use it twice a day). I chatted to Herbie who seemed quite chirpy so I hoped that the day might improve.
Dan thought the rash was no better, maybe even a little worse which was definitely NOT what I had hoped to hear. I had been clinging to the hope that by Monday it would be improving but with less than 24 hours to go I was feeling pretty skeptical.

Dan called later to say the doctor had been in and agreed the rash was worse. She reported that bloods were good though and she hoped that the rash would start to show signs of improvement when the ciclosporin levels went back up. CRP was in the 20’s so had come down. I was waiting to actually see these bloods as was Dan.

I received a FaceTime call from Herbie at lunchtime and he was MAD! He demanded I came back to the hospital now and that Daddy went away because he was mean to him. It turned out that Dan had told him to eat his dinner and he wanted to play his ipad. Maybe a little steroid rage?
Thankfully he calmed down but I noticed his rash was worse and that he kept itching.

The bloods came in and Dan called to tell me them as he knew I would be upset about a couple.

HB 88 (really holding it’s own now and climbing)
WCC 9.91 (another big jump worryingly)
Neutrophils 8.16 (very very high 😦 )
Lymphocytes 0.40
Platelets 112 (back in 3 figures all by themselves !)

CRP in the 20’s apparently but wasn’t written up.

Urea 4.4
Creatinine 28

The neutrophils were a worry, they had shot up and so in turn had the overall count obviously. Dan and I decided we needed an explanation as we were both beside ourselves with worry so he asked the nurse to talk to the doctor.
Thankfully she came to talk to him rather quickly. She explained that the steroids would make the neutrophils rise like that and wasn’t a concern. Panic over, briefly.

The boys did manage a trip to the park to try to keep his mind off of the itching.

Apparently he ate really well today, marmite toast for breakfast, jacket potato and beans for lunch and toad in the hole for dinner. Dan however didn’t really have such a balanced meal.

As bedtime got nearer I was to learn that the itching was quite unbearable and he was given a push in the Hickman line to help ease the itching and aid sleep. They also prescribed a different and stronger cream.

This feels like a particularly bad day and I’m sad about Herbie being uncomfortable. I hope that finally tomorrow things calm down.

Another boys weekender

T+43

It’s always harder to write a blog from a distance. I can really only relay what Dan has told me about their day. I know that boys weekends often consist of a lot of TV. Mainly Adventure Time, Simpsons and Regular Show with a sprinkling of Peppa Pig and today there was also a Simpsons Movie and Curious George movie enjoyed (and I’m sure Daddy managed some football & Glastonbury too).

Then there are a few games, at the moment Moshling Rescue is the app of preference!

Breakfast was still a struggle, he really needs something new to eat so I am hoping that Asda will deliver Peppa Pig porridge pots which might be eaten due to novelty factor but don’t hold your breath!

Dan and Herbie chatted to us all a few times during the day. Herbie was upbeat and happy. The rash seemed pretty similar but the double dose of steroid had only been given this morning for the first time so hopefully by dose two there should be signs of improvement. It’s been itchy and he’s needed steroid creams on the outside and Piriton to try to ease that.

Of course despite the rain Herbie was keen to go out and at least the rain guaranteed a child free park!

The problem with going out though is that you have to go back in! They stayed in the park for a bit and then headed back to see if the lagoon was empty.

Sadly it wasn’t so he had to head back but with a pack of Starburst to placate him!

The bloods were in

HB 86 (once again holding it’s own which is great!)
WCC 6.38 (mmm…it’s a big jump again, hoping it’s all good)
Neutrophils 5.33 (again a big jump!)
Lymphocytes 0.46 (up too!)
Platelets 77 (wow! The platelets are really doing it for themselves now!EXCELLENT)

CRP 47

We need to see another drop in CRP and take a close look at the WCC and neutrophils tomorrow.

We are also hoping to see ciclosporin levels rise rapidly over the weekend which should calm the GVHD. These bloods are taken very early in the morning, around 5am, so before the meds have a chance to take effect.

As you probably can see these BMT meds are such a delicate balancing act.

Dan as always has done superbly at keeping to our strict regime. I spoke to him and Herbie just a few hours ago.

Herbie asked “When are you coming home?”
It broke my heart just a little to hear him refer to Robin Ward as home, but I know I have done it too and I corrected him saying “I am home noodle…when are YOU coming home is the real question!”
It made him giggle but I wish someone could answer that one sooner rather than later.

Rashes, goodbyes and more park life.

T+42

I awoke to find a small rashy boy in my bed and he was attached to an iv too but he had still managed to get himself over to me.  Just for a while, with my eyes closed, I could pretend that it was a Sunday morning at home as I snuggled up to him and breathed in the gorgeous smell of Herbie. If you are a parent you will know what I mean. The strange thing is that Herbie smells different! He uses creams, bath oil and various other things that just give him a distinct GOSH smell!

We got up late, it was nice. A bath for Herbie and shower for me and then lots of debating about breakfast. We really are struggling with options for him right now. Holly was our nurse and she tried to help with the breakfast choices but to no avail. I gave in…barbecue beef hula hoops it was after all.

The rash looked worse and I began to worry about what they would do to stop it.

Holly said that it was fine for Herbie to go out again today so he was happy and she even let him run about the ward for a bit.
I ventured to the parent kitchen and met a couple of mums from the other ward that I have become friendly with. Two of them were leaving today. I was so happy for them but obviously wished we were heading home too. We said goodbye and promised to keep in touch.

Helen came and so I headed to Costa so that I could get an early lunch and on my return found Herbie busy doing number bonds to 10.

Hospital school has once again been brilliant.

Olga, the doctor arrived. She explained the plan to sort out the rash. Steroids, for the weekend only , will double in dose to try to sort rash and stop it worsening. The iv antibiotic , Vancomycin ( known as “The Van with mice in”) was stopped , great news as it meant no finger prick today. Aciclovir could be restarted, orally, and hopefully a couple more will go on Monday.

We had planned to SKYPE Herbie’s class but something didn’t work out
At 2pm , one of the GOSH volunteers, Julia, came to play with the Moshi collection.
When I returned I got an ice lolly and we shared them.

Post was exciting today! Thank you to Floss for the news and Freddo. Jo and Abi, thanks, he loved  the letter and card. A card and a Mixel from Rachel, Archie and Sid (And mags for me). Another instalment from Hope and gifts from Archie and Lyndsey. Even a voucher for tea at The Randolph! Thank you to you all, you are great.

Daddy returned from home and it was time for another trip out.

When we returned it was time for me to head back to North Lye. I’ll miss my boys this weekend.

Bloods

HB 84
WCC 3.22
Neutrophils 2.53
Lymphocytes 0.38
Platelets (drum roll please) 59! He’s still making ’em!
CRP 73
Urea 3.4
Creatinine 26

Sleep tight all and fingers crossed that the rash starts improving.

Boy about town

T+41

It’s amazing what small promises can mean to someone and how they can change a mood. After a long time of. Herbie not being remotely interested in going outside he suddenly felt differently. Up until now, although technically his counts are good enough to venture out each day, he has been adamant that until he could go home he wasn’t going out. However, yesterday he had a change of heart and with the promise of a trip out of the hospital today he woke bright and eager to know when we were heading out!

His rash seemed worse today. Not nice to look at but he says that it isn’t itchy and that’s a good thing!

Rashtastic

Rehka came in early to tell me that his bloods looked good this morning so I was keen to run and get them from the folder.

HB 86 (up, ok only by 1 but it’s gone up not down!)
WCC 4.28
Neutrophils 3.38
Lymphocytes 0.21
Platelets 54 (it’s true…the boys making platelets, yippee)
CRP 176 (still high but down by over 100 so happy it’s going the right way)

Urea 4.1
Creatinine 25 (all good)

Helen arrived to teach Herbie so I headed out to the park and Costa for a bit of lunch. It was beautifully sunny and warm and it felt lovely to get some sun on my skin. I find myself mire and more watching people in the street and wondering if they are parents of children staying in GOSH. Sometimes it’s obvious as they have a child with them, obviously allowed off the ward or maybe just finished an appointment.
I headed back to Robin Ward and Herb was tucking into a burger and chips.

After his 1pm oral meds (Dan and I are still administering these via his PEG despite a delay in going home) we got ready to walk outside. This meant completely covering up as he has had chemo and now has skin GVHD , he is more susceptible to burning. We put on long sleeves and long trousers for the first time in 7 weeks and headed to the desk to get sunscreen. The nurses made a huge fuss of him and he was grinning from ear to ear.

Outside looking in on Room 2

We left the building and although Herbie has left his room a few times to have scans etc he hasn’t left the hospital since he walked in on May 6th!

Outside for the first time in over 7 weeks

He ran like a wild horse, charging down the road, grinning from ear to ear and happy as anything. We headed to a park that I passed daily that I had never seen children in. Sod’s law that we arrived to find three kids playing! Herbie patiently waited for them to leave and we went in but our visit was short lived as the children returned.

Herbie ran back and by the time he arrived on level 5 he was keen to get back in his room and watch TV.

Back to Robin Ward

He became quite grumpy after his visit out and very tired. He fell asleep for a few hours and missed saying goodbye to Rehka, one of his favourite nurses, as she was heading off for ten days holiday and said she hoped he would be gone by the time she came back to work.
When he woke he was sweaty but thankfully no temperature. He was also full of beans!
We put some more cream on his rash and tried to get him to go back to bed but he’s awake now, at 11.10pm, grinning from ear to ear!

40 days and 40 nights

T40

So Paul Veys had expected us to have gone over a week ago but here we are on Day 40! To be honest we had always anticipated 8 weeks and it’s only 7 weeks but quite a few people are leaving in the next few days from Robin & Fox wards, some that came in just before us some just afterwards. It’s sad because it was meant to be us too but then again I know that if we had left we would have been readmitted either here or at home so that would have been worse!

I woke wondering if he had spiked in the night. I was hoping for big things from the steroids and on asking it appeared that they had lived up to my expectations. No temperature and no desaturation during the night. It was a good start to build the day on. The diahorrea had also stopped, steroids really are amazing. The rash however was still very much there!

GVHD rash

After his morning bath we applied the cream that we had been prescribed for the rash.

I was pleased that Herbie was keen for breakfast, the excitement over a two weetabix order was short lived though and Herbie started to get cross and decided he wasn’t eating his breakfast.
The doctor arrived, she was going on about his GVHD etc and was beginning to sound like a one woman pity party but then I remembered, she is new to BMT & our case so I took her with a pinch of salt.

Post came earlier than usual,

Thank you Lily and Sam x

And cards from Diane, Derek etc and Gay.

Thank you Gay & Colin

Helen arrived and I took the opportunity of an hour away from the hospital watching the world go by.
I returned to watch Herb munch some of his lunch before he continued playing games on his ipad and not really talking.

Since our story was in the Oxford Mail we have been inundated with calls and messages from other papers and magazines asking to interview us. Today I was called by the press office for GOSH asking if I was interested in highlighting bone marrow transplants at the hospital!

Catey, who is filming, came to catch up and interview me. Then it was just a long afternoon spent sitting doing loom bands and playing the ipad.

Rehka came in to check I knew about a liver biopsy which I didn’t! A few moments of panic…why , what’s going on etc. I tried to call Dan as I felt quite upset. Rehka was shocked as she said Doctor said they would tell me! Turned out it was a mistake! The doctor told Rehka the wrong name! Big sigh of relief all round.
He enjoyed doing blood pressure for student nurse , Nicola,

Playing nurses

Herb got an appetite on him from about 7.30pm. He chatted and played his ipad and finally crashed out around 10.20pm.

Keep those fingers crossed for another good day…..

Bloods

HB 85
WCC 4.39
Neutrophils 3.51
Lymphocytes 0.22
Platelets 48 (drum roll please , he made some of his own!)
Urea 4.3
Creatinine 37

CRP >270

“The dogs are off the leash “

T+39

The day didn’t start that well for Herbie and Daddy. Already tired from a restless night , Dan woke to find an oxygen mask next to Herbie’s face and monitors on. Apparently Herb had desaturated in the night and so oxygen wafts were required and monitoring. He woke with a temperature but Dan reported he was quite bright. Not long into the morning though and he was suffering from an upset tummy and was also sick.

I drove to London as usual but gave my mum and dad a lift too. When we arrived Dan explained that Herbie also was covered in a rash and GVHD (Graft vs Host Disease) was the most likely cause.

Herbie was keen to see us all and after the initial hugs etc etc he wanted to open some of his post .

A card from Libby.

A brilliant incredibles outfit arrived from Ben, he was thrilled and wanted to wear it all day!

Thanks to Sam for all of this brilliant loot!

And to Lily and Kitty’s teacher, Rachel Bradfield for the above. He loved the bag and pencil case especially!

We were happy to see Herbie  looking full of beans but at 3.30 a temperature got the better of him! The ward round happened whilst he was asleep.
Thankfully everything was explained.
They dropped Amikacin because the kidneys were not happy. This meant adding in Rifampicin again as micabacterial cover. They did that but Rifampicin can mess up ciclosporin which helps GVHD. They started higher steroid doses down his Hickman which they said should stop the rash and fevers. He explained that the new  lymphocytes are like young dogs and the ciclosporin is the lead, as the levels dropped they were suddenly unleashed and raging after the micabacteria. This caused high temp, high CRP , rash & inflammation.
Herbie was still having temps when the others left but he’d enjoyed having them visit.
The evening was fever free but Herbie didn’t want to go to bed after his big power nap. I finally got him in bed around 11.30pm and even then he was still singing!

 

blood results
HB 91
WBC 6.3
Neutrophils 4.96
Lymphocytes 0.46
Platelets 46
CRP >270

Urea 3
Creatinine 39

I head into Day 40 hoping that the steroids do their trick , tame the dogs put them back on the leash and we can finally continue with preparations for our release.

Visitors and temperature spikes

T+38

we are heading to 7 weeks in Great Ormond Street for Herbie. 7 weeks ago today he left North Leigh to start this journey into the unknown.  He hasn’t been out of the hospital for 7 weeks, hasn’t gone outside for 7 weeks, been home, slept in his own bed etc etc.

So after all of this time it’s a shame that still he is in and having temperatures. The temperatures had continued over night and it has been decided to restart the Amikacin! I think this is the fifth time since Nov 23rd 2013!
We have our suspicions that this is the micabacteria raising it’s ugly head and giving one last surge.

Grandma and Grandpa travelled to London to visit him in the same room for the first time in 7 weeks. Herbie was thrilled!

The bloods were

HB 94 (so blood holding it’s own
WCC 5.51
Neutrophils 4.19
Lymphocytes 0.29
CRP 239!

Urea 2.5. /creatinine 36

Everyone is tired and a little fed up so apologies for the late and short entries xxx
Fingers crossed that by tomorrow I will have more and better news.

Boring, boring, boring

T+37

For the last few days Herbie has been over using the word boring. Nurses are branded “boring”, the doctors are definitely “boring”, the day is “boring”.

Dan reported that this trend was still continuing this morning. Breakfast cereals have been “boring” for a few days now with crisps being the preferred choice!
Dan told me that Herbie was warm on waking and breathing rate was up a bit too. All signs of an impending temperature! Ugh! However when the nurse, Ella, did his obs he was 36.5 so fine.

He needed another dressing change as the one done a couple of days ago was coming off.

Herbie always like to be involved and help with peeling off the old dressing.

The doctor came in to see them and apparently, Dan was totally unaware, but Herbie had spiked, almost 74 hours since the last time. We were both gutted! The doctor said it was probably engraftment fevers (also known as good fevers) but she would chat with the big boss and get back to us.

This news was just so annoying, fevers were gone, things all looking very positive and despite not actually saying it myself, talk of the H word. All on hold AGAIN no doubt.
The coverage was changed again so he is now on iv Meropenum , micafungin , ciprofloxacin and vancomycin…back where we started. That said at least lungs etc have all been checked and are not the cause. The line didn’t want to bleed back today and this happened last time the fevers hit, that time it was a line infection.

This was all going on but the boys still enjoyed some puzzles, games and a little Thomas The Tank Engine.

Bloods came in and reflected what was going on…

HB 88
WCC 5.20
Neutrophils 3.92
Lymphocytes 0.21
Platelets 64
CRP 155 (back up by 46!)

Urea 2.5
Creatinine 36

Kidney function just proves how quickly things can turn around though.

He continued to be a little warm and when one of his fave nurses Rehka came on shift for the evening he was already in bed feeling warm. More iv paracetamol and two weary parents, one who had been at the coal face dealing with Herbie, the other at home coping with one of the most hectic weekends in a while.

I think Dan and I are starting to see Herb’s point…

BORING being in hospital
BORING fevers
BORING waiting to be discharged
BORING feeling stressed

BORING, BORING , BORING,

No pity parties but can we all go to that place in Nor Lye beginning with H now please? (Oh and for the record…Fevers…you are SO boring and last season!)

Moshling rescue, Muppets & more tea please

T+36

Boys weekend so this will be a short update and Dan managed 1 photo all day…I’ll say no more!
Herbie kicked off with a good breakfast which was a great sign as he has not been a big breakfast fan the few days since the fevers. Early morning reports were all very positive and they were settling down to a chilled day. Unlike the gorgeous temperatures of Nor Lye, Room 2 is carefully climate controlled so it’s very hard to know the temperature outside. Obviously with the filtered air system you are unable to throw open windows (in fact none of them can open) so unless you actually leave the hospital it’s unlikely that Dan would have known what the temperature was outside.

On Thursday Herbie had spotted a new, free, ipad Moshi game , similar to Candy Crush, called Moshling Rescue which he had seemed to be be becoming quite addicted to! Apparently much of today was spent playing this game and now even Dan is a little hooked! There were also 3 jigsaw puzzles completed and a Muppet film watched. Dan said he was awash with tea!

The doctor came in around 2pm and said that she was extremely pleased with Small. She said that “the CT scan was boring and didn’t show anything new at all” which was brilliant (but to be honest, what we had expected)
Seemed like things were looking pretty positive.

Bloods were as follows…

HB 93
WCC 5.65
Neutrophils 4.21
Lymphocytes 0.53
Platelets 18 (transfusion required)
CRP 85 (yippee , still coming down)

Urea 3.6
Creatinine 39 so kidneys doing a grand job.

In order to be discharged they like to get parents trained on administering milk feeds, drawing up and administering meds and they need to sort a drug timetable.

The good news is a that we don’t use milk feeds so no worries there. I spoke to a dietician , not James our usual one, who said it was brilliant that he had managed transplant without TPN (total Parental nutrition which is administered for long periods throughout the day via iv. ) and that he had literally needed a few days of milk feeds over 3 weeks ago.
So this really only leaves using the Peg for medicines which we can both do now anyway.
When using the PEG to give medicines it’s really important to clamp it after use otherwise tummy juices will appeared and spill everywhere! Nice!

So we leave the boys happy in their Moshi world until tomorrow, Dan was a bit put out that Herbie finds football boring, but the ipad was calling!

Platelets were given this evening so that number should look better tomorrow.
Day 37 and thanks to members of our fab family , some decent money was raised for Oxford Children’s hospital today and the house had a good old clean ready for when this Moshi fanatic returns!,thanks guys xxx

Sweet dreams!