Saying goodbye to 2014 and thank you to you

T+228

So here we are on the last day of 2014. What a year, what a roller coaster we’ve been on.

On NYE 2013 Dan and I stayed home and there were many tears , many hugs and  despite trying to be optimistic there were moments of despair. As others celebrated and drank and ate their way into the early hours of 2014 we tried to make sense of what 2013 had left as a legacy and we hoped that 2014 would bring us strength to deal with what may be ahead

As many of you know, the first few days of 2014 didn’t offer the promise of better times initially and by Jan 7th Herbie was readmitted to hospital and the bone marrow transplant process really picked up with a sense of urgency. Once again though I remind myself of this not to dwell on the sad times but to put into perspective the place we are in now.

We have had a brilliant Christmas and Herbie has been a ble to enjoy the season like most other 5 year olds in the main. Obviously there are still restrictions on us all  which has lead to some family members not being able to come to gatherings due to sniffles etc that they don’t want to pass on and in fact our New Year plans have been altered for this very reason! We are grateful that our families have been thoughtful and accommodating  though so that we don’t need to miss out for a second year running.

As well as being so grateful to be in a different place at the end of 2014 from the place that we started we want to say thank you.

Thank you to our amazing children who have been so brilliant this year and put up with so much disruption but kept us focused and in touch with reality when we felt like we were living in another time zone. We love you all so much.

Thank you to our families who have been the most wonderful support to us this year with the age old staples of love and care as well as providing childcare, gifts, food, transport etc etc and just being there. Our mums, dads, brothers, sisters, brothers in law, sisters in law, nieces, nephews, cousins , aunties, uncles…you are all fabulous…we love you…thank you.

Our friends, old, new and virtual…who have supported us, messaged us, been there for us at the hardest times. That text that arrives at just the right moment, the phone call just to say hello, the offer of a quick break and all of the gifts, cards , letters and thoughtful gestures. Without these we wouldn’t have made it through, especially the weeks in transplant. Our friends mean so much to us and we are lucky to have you all x

Work…My school colleagues have made this journey so much easier. They have allowed me to switch off from the worry of career for a while to immerse myself in being a full time care giver and I thank them for that. The stress of it all engulfs you and there is no room to think of anything else.  Thank you for being there, for sending messages, gifts and keeping me in the loop. Xx I look forward to getting back into the fold in 2015.

For Dan it’s a different story, he couldn’t give up work as it’s his own business but his wonderful customers have been supportive and flexible and understanding and I know that without the support of everyone and particularly his friends at Prentice he wouldn’t have made it without a serious breakdown so thank you xx

School…I know if you read this blog regularly you will know that the children have been so supported by their schools and Herbie has been made to feel that he is still a major part of his class despite not attending for over a year. Rufus was the proud recipient of a gold Blue Peter badge, the super hero day was amazing and the school raised almost £1.5k for Great Ormond Street. I also include Hospital School here as they have been brilliant, especially the wonderful Victoria and Juliet from Oxford and Helen from GOSH and all of those at The Hub.

With all of the medical intervention this year we obviously need to thank the amazing teams at the JR hospital in Oxford and GOSH in London. Especially the doctors from the ID team & Dr Hull and the  staff on Bellhouse Drayson , Tom’s & CDCW in Oxford. Waseem Qasim , Paul Veys , the immunology and BMT teams and Robin Ward in GOSH. You are fabulous!

Finally our amazing Community Nurses, Morag, Sarah, Laura, Ele (and Becky!) who have been part of our daily lives since 2013 and will continue as part of our weekly routine for some time. They have always gone out of their way to provide the best care for us and accommodate us above and beyond the call of duty. You rock!

This week Herbie had his final immunoglobulin infusion for 2014 and started Pamidronate for his bone density issues. We move into 2015 without tears and with optimism. We like this new place!  Thank you to those who sent gifts recently  and letters. Herbie was thrilled to hear from Hope again and I was touched by the thoughtfulness of the Ezboard mamas.

So Happy New Year to each and everyone of you . I hope it brings you happiness , and health x

I will blog again in 2015!

 

Carefully running up to Christmas

T+212

Where do I start? Probably with an apology. It’s been some time since my last blog post and I know that some of you that are not on Facebook or that don’t see me daily will be wondering what has been happening.  Well I’m pleased to report that things have been going well and I have quite a lot to report!

After the hospital admission in November we had a speedy recovery.  Within a day of being home Rufus and other friends and family came down with the same symptoms confirming that Herbie had indeed just had a virus. I chatted with our GOSH immunology nurse who reminded me that he was only hospitalised as he has a Hickman line. The Hickman Line must remain free of infection and any fever could potentially be a line infection.

As the days went by we all got back into routine. At the start of December there was much excitement as our North Pole elf returned to spend the month with us. Last year he helped Herbie get through some tough times.

Christmas 2013 with Claus McJingle

 

Everyone was pleased to see that he had returned as it heralds the run up to Christmas has started.

 

 

Dan and I were excited but cautious…we know how quickly situations can change so we vowed to continue to take each day at a time And enjoy it. This was kicked off by a lovely ‘tea’ at the Randolph Hotel and a little Christmas shopping in Oxford courtesy of the lovely Lynsey and Archie. They had given us the voucher back in the summer whilst we were in GOSH and it was great to finally get the breathing space to use it. We had a lovely afternoon.

 

On the Wednesday we had a big day of appointments at GOSH. You may recall that our GOSH consultant agreed to bring the scans forward a few weeks in order to see if the iv Micafungin was still required.  Community nurses were due to us for 8am to do the dose prior to heading to London but when we didn’t have anyone knocking at our door by 8.30am (which was very very unusual) we knew something was up and that we would have to go to London without the iv and have it later.  I started to worry that the day wasn’t going to plan, it felt like a less than positive start to this important day but the journey to London was  easy and we began to relax.

London looked festive. Herbie enjoyed the tree and lights in Brunswick Square and we reminisced  about our time in transplant and the warm summer days spent walking there. What a contrast.

We arrived in time to get our scans , Herbie had the usual obs and all were good (his weight continues to increase… those steroids!!)

First he had the CT scan. We’ve really had too many of these this year, in fact we were told no more for a year back in June but  hey ho!

 

Herbie took it all his in stride. The scan was over quickly and then we raced  up to  see Waseem who confirmed that if the scan looked the same or improved the iv would stop but that he couldn’t let us know until the following week after the reports were in.

We  then had a dexa scan to check bone density  (long term steroid use effects this) and a lung function test. The lung function test results were fed back immediately…best yet! We were thrilled as he’s in the 90%+ range.

A quick visit to the Lagoon to grab food and we bumped into Holly, one of our lovely Robin Ward nurses from transplant. We were so pleased to see her. Herbie had a quick look at the Christmas display and we wrote a message for those still in hospital and posted it.

Then it was time to head home. I felt that the next few days would be so tricky as we waited for news from the CT.  We prepared ourselves for Waseem to say that we needed to continue with the iv. It may not seem such a big deal but if the iv could stop that meant no more daily community nurse visits and this meant more freedom and also  we wouldn’t have a repeat of last Christmas which was dominated by illness and nurse visits.

The following day I noticed a missed call from Ele, one of our community nurses.  I called her back and she asked if I had heard the news? I hadn’t ! The scans were much improved and the iv was stopped! I was so so happy and Herbie punched the air and shouted YES! when Ele told him.  Almost a year since the iv’s began he was finally finished with them. It was music to my ears.  We went straight out, because we could!

The following day  we had a call from GOSH to confirm that we had heard the news and to give more info on the scans. The CT showed overall improvements which was great but then we were advised that the DEXA scan had shown that his spine was a little fragile from long term steroid use and that he would need some iv therapy for that. I was shocked as I think the DEXA scan was the one I literally hadn’t worried about!  We hoped that it would be arranged so that we could administer at the JR rather than GOSH as the loading dose was to be given over three consecutive days.

Thankfully there  wasn’t time to dwell on it as Herbie had an important job to do. He was  playing Angel Gabriel in the school Nativity. Last year he missed his first Nativity as he was so unwell. This year his teachers had discussed with me early on that they would like him to be Angel Gabriel by Skype if he was unable to be there. Waseem had told us that he could take part it in if all was ok at school and so we went ahead. Herbie loved everything about it, being reunited with classmates, dressing up, being on stage and all of the whoops and cheers he was given. “This is the best thing that has happened to me all year ” he said.

It was emotional watching him on the stage, beaming from ear to ear , speaking his lines so clearly and faultlessly. We couldn’t have been prouder.

Herbie actually made the Nativity this year

Today we had our annual family Secret Santa party. This was again a time for reflection as last year we knew that the following day Herbie was to have a lung biopsy. He was due to spend three days in hospital but ended up being in almost until Christmas Day.  He also spiked a temperature  at last years party and needed to go home. This year he had a ball , dressed as Olaf the snowman (his secret Santa gift) we were able to see our boy and his siblings and cousins start their Christmas countdown.

 

So I will sign off now with 10 days until Christmas and 2 days until Herbie is 7 months post transplant.

I will post again hopefully before the big day. Fingers crossed that the news continues to stay positive. We are now totally off MMF and the steroids are being weaned to (6mls twice daily) . His bloods, although hit rather hard after the virus a few weeks back, are recovering

HB 13.8

WCC 6.71

Neutrophils 5.03

lymphocytes 0.27

platelets 226

My little elf

 

hope you are all feeling festive!

 

 

 

 

Say cheese!

T+59

Today was the first day of being at home with school and work happening around us. I’m so glad that we got back from GOSH with a few days before term ends as I still have things I need to do before Friday!

Herbie woke with an insatiable appetite, it continued throughout the day and I was constantly hearing “mummy, I’m still hunjey (hungry)” Snacks seemed to just roll into one long meal that lasted from breakfast until bed!

Once again he attacked his fluid target from the moment his eyes opened too, so all in all food and drink are all going very very well. This is a big bonus post transplant as most children leave hospital on some milk feeds or TPN, thankfully we have avoided both. The steroids are making him want to eat more too. When he left GOSH on Friday he had final measurements done by the Body Basics study dietician. We had agreed to the study before we were admitted and Herbie had had a range of measurements taken on his first day on Robin Ward. We had kept a diary regarding his food and fluid intake for them and on discharge the measurements were repeated to see what the effect of the BMT had had on his body mass, muscle tone, height, weight etc. Although we didn’t get results of the study they could tell us that he had grown significantly in height & weight!
I had already noticed how tight some of his clothes were (mine too!)

We had a lovely morning, some reading, some x-box for Herbie whilst I sorted the washing and the highlight was our dancing session. In hospital we always played Herbie’s playlist through our Bluetooth speaker each day so it was lovely to do it at home and crank it up nice and loud! Herbie was particularly happy when he realised it was the first Monday in ten weeks without the dreaded NPA!

Auntie Charlie popped in to visit and Dan returned early from work.
The others came back from school and it just seemed like it was before transplant.
The boys enjoyed the Xbox whilst Herbie had his iv’s. Herbie was happy to see community nurse Ele, almost 10 weeks to the day since she waved us off to GOSH.

A few weeks ago I was referred, by GOSH press office, to a news agency who were keen to use our transplant story after seeing it in the local press. Although my interview had taken place a few weeks back the photos couldn’t happen due to the GVHD and Ru’s slapped cheek. Today however a press photographer was coming to take pics at 3.45pm.

When he arrived the boys pretty much ignored him, other than saying hello, and continued on the Xbox. He decided to get some shots of them playing there.

Then he took them out for some shots in the garden and behind the house.

Finally he had what he needed and he took a few of my pics too from our time in GOS.

Herbie was thrilled to have Daddy’s chilli for supper, he’s been going on about it for the past 9 weeks. Not a single scrap was left, if the bowl had had a pattern he’d have licked that off too!

Our lovely day was made perfect by a message from Chloe telling us that her brother, an old friend of Dan’s, was offering us the chance to go, as a family of 6, to Camp Bestival 2015. We had talked about doing it for a couple of years now but illness has got in the way. Next year we aim to celebrate. What a wonderful thing to look forward to. Thanks to Chloe, Kev, Esme & Phoebe and of course Ben and Rob da Bank. You made our day today with your thoughtfulness and generosity x

So another lovely day at home. It’s hard wondering what his blood results are after weeks of always knowing them but hopefully we will get some soon.

Sweet dreams all!

HOM HOM HOM

T+55

I didn’t sleep well last night. My mind was a whirring mess and I was worried that I wouldn’t be awake, showered and dressed by 7.30am to meet the nurse, Shanice, to prep Herb’s meds. I ended up being ready at 7am! The problem was that Herbie wasn’t interested in waking!

When Herbie finally woke he wanted to have a bath and get breakfast underway.
Amy came in to spend time with him. He really loves Amy!

Amy, the play worker on Robin & Herbie

We decided to take lots of photos of the staff as you never know if we might get discharged before their next shift. Sufi wasn’t our nurse but she asked if she could pop in and see Herbie to sing their favourite duet… The eat eat eat song.

Sufi and Herbie

She was so sweet saying that when he’s discharged she will miss him so much. Amy said the same adding “what will I do without you Herb?”

Dan arrived and Rehka took us to recap our line safety talk and finish discussing the food lists for discharge. Herbie had Jess in from hospital school doing experiments!

Herbie asked lots of nurses for photos

Sandra says goodbye to Herb

Sandra obliged but Herbie and Lucinda had a scrap!

I left to head back to the shire and Dan stayed.
The bloods were a little confusing…

HB 105
WCC 13.20
Neutrophils 10.41
Lymphocytes 1.56
Platelets 163

CRP 33 ( ????)

The obs were all good with no signs of infection. The CRP will be repeated in the morning.
We just have everything crossed that it’s just a blip.
Ciclosporin levels came back high! After a week of trying to get it up higher to stop the GVHD. The dose had to be reduced.

The boys settled down to an early night in Robin Ward and I find myself , once again, with an over active mind.
I need some meditation!

HOM HOM HOM HOM

HO HO HO …it’s drawing nearer

T+54

I want to start the blog by talking about community tonight.
This whole transplant journey to date has shown me that community spirit is still very much alive out there. So many things over the last few months that I have written about here in the blog that have really amazed me. North Leigh School super hero day…what a thoughtful gesture to celebrate my brave boys whilst the children have fun and learn and raise money for GOSH. The school really have supported our family so well prior to and during BMT. They have looked after Lily, Kitty & Rufus, valuing them and supporting them and ensured Herbie has always felt part of the school despite not properly attending since November 2013! The Skype sessions with his class, the post and books sent, gifts from teachers and teaching assistants. The community spirit extends beyond the school, fellow Nor Lye residents donating money to the Dream Team from prize money for winning races to best scarecrow. The net goes wider… To my school community. Witney Community Primary staff have supported me through this, making it easier for me to dedicate my time to my family but giving me the space to return, the parents have sent messages of support and gifts to Great Ormond Street, one even plans a Super hero day at her nursery to raise money for GOSH. BUT the net goes wider still…
This morning I receive a text from Herbie’s wonderful outreach teacher telling me that she was at Blake School in Witney watching the Y6 class do their end of year play. They chose 3 charities , one being GOSH , to raise money for and named Herbie as their reason for the choice! Then I receive a message from a friend and fellow FS teacher at the same school saying they also want to do a superhero day next week too , all proceeds to GOSH! I’m overwhelmed by everyone’s thoughtfulness and support.

I headed back to London this morning, arriving in time to go through the discharge talk with Rehka and Dan. Quite a lot to take on board there! Then there was the meds to prepare and administer.
Herbie was thrilled to see Rehka.

Rehka and Herbie

They had a real giggle today.

Dan left to go home briefly and watch the girls play leaving Herbie to enjoy his post!

Thanks Lily & Sam for the brill books and room decoration

Thank you Harry!

Thanks Donna and Richard.

Thanks Rachel, Ade, Sid and Archie.

He doesn’t have one, he loves the Mixel and it’s all brill (including Dan and I’s treat.)

Thanks Jo, Richard, Elsie, Meg and Seren!

News from Floss!

Jess was his teacher again but Helen popped by with his learning record of her time as his teacher.

Herbie was quite sad about the possibility of not seeing Helen again and promised to look for her when he comes back for clinic.

The bloods were in
HB 103
WCC 12.12
Neutrophils 9.85
Lymphocytes 1.45
Platelets 160

Kidney and Liver functions improving daily.

There was the obligatory walk to the vending machine to purchase steroid hunger foods.

There was also some superhero action.

Sarah , one of the HCAs , looked after him tonight. She also looked after Lily this time last year!

After our late night Skatoony episodes Herbie escaped onto the ward! He was hilarious and loud!


But ended up with tummy ache again from running about!

A full tummy and over 2000mls of fluid drunk meant he felt asleep immediately.
I did his 11pm meds and now I must sleep! One of the nurses, Emma, went on holiday today, she left him this note!

Tomorrow is another day closer …
HO! HO! HO!
I just can’t say it! Fingers crossed xxxx

Stepping up a gear

T+53

My first contact with Dan and Herbie wasn’t until 10.30am. Dan sent me a message to say the meds chart was recalculated and he was going to be preparing and administering drugs again later today.

The list of meds seems to keep increasing although we are going out on some meds we came in on.  It looked quite daunting to see how many drugs to do. Our house is already full of oral meds for Lily and Herb as well as the paraphernalia that comes with home administration of subcut immunoglobulin for two children.  This includes a meds fridge,  3 months supply of syringes, ‘magic cream’ , pumps etc etc. I actually administered Lily’s yesterday and this was what I needed…

Subcut immunoglobulin nreplacement therapy

So looking at the list and knowing what that will bring in terms of thing to sort.
We also have a box of things for community nursing and this will continue on discharge with Amikacin and Micafungin iv’s once daily over an hour.

Herbie’s appetite remains influenced by the steroids. Big bowl of shreddies, two pieces of toast and a packet of hula hoops, just for breakfast! He certainly won’t come out of hospital ten percent lighter than when he was admitted.

Later I was called by Dan after the Community nurses teams phone number and bleep. I dutifully supplied it knowing this was another step closer to home.

Dan prepped the meds and administered them.

Olga, the doctor came again and was pleased with his skin. She said they needed to get him home . They took the drug chart and said it needs tweeking ….already!
 

Dan experienced a few steroid rages, one even occluded his line when his two iv’s were running.
He calmed down eventually.

Bloods
HB 104
WCC 8.93
Neutrophils not available
Lymphocytes not available
Platelets 174
CRP <5

All looking good.

So this is a brief blog but remember,things are picking up!

The muddy waters are becoming clearer

T+52

Today I am writing about life in GOSH whilst I am home with my other 3 babies.
Dan reported that Herbie had a good start to the day. Of course it’s Monday so it was the dreaded NPA. Thankfully it wasn’t as traumatic as it has been and by the time I chatted to Herbie he had had his bath and breakfast and was bright and chatty. He was very excited about going to a big park with Daddy.

Next time I spoke to Dan he was back in the room after their outing to the park.
Herbie had loved it all but, as he had a few days earlier, he got so over excited that he over did it and had to return after half an hour.


On his return he had tummy ache and fell asleep, missing his dinner and the teacher.

When he woke he was refreshed. The doctor was pleased with him and the plans to redo his drug chart and for Dan and I to pick up the drug administration again were moving forward.
He made some Lego with Daddy and listened to 6music and played Moshi Rescue. (And look at that hair growing back and catching the light!)

The Stoma Nurse came to just check again that we were happy with the care and use of the PEG … he only had it put in on April 25th…hehe, just a little late!
Things were all pretty good in room 2.
The day wasn’t without a little Steroid rage though…

Roid Rage

Blood results
HB 105
WCC 9.94
Neutrophils 7.77
Lymphocytes 0.53
Platelets no figure given today

When school finished here at home we face timed Herbie and it was so funny. He wanted to ‘sit on the basket’ in the living room to watch Rufus play the x box! Lily placed the ipad on the basket and it was like he was in the room. They ‘played ‘ like that for about 30 minutes! Herbie said “when I come home do you know the first thing I’m going to do? Go to my tree house and stand on it and shout to the village EVERYONE I’M BACK!!!!!!!!”
Bless him.

So we are moving on to Day T+53 and hopefully a day closer to Herbie standing on the treehouse yelling over the fields of Nor Lye.

“Muddy water, let stand, becomes clear.”

Lao Tzu

*Dan said the mood on the ward was very sad today after yesterday’s shocking news. Everyone is affected. We have been thinking of Blake and Alex so much today xx

A spectrum of emotions

T+51

Another lovely late start, 9.30am! What a shock it will be getting the kids up and ready to drop Lily and Kitty at their new secondary school for 8.25am on Monday! Herbie was not in the most compliant of moods and complained about lots of little things, including being told to drink. I decided to try to let it go over my head. After all he’s a 5 year old boy, who has been away from his home and family life for almost 9 weeks and had a bone marrow transplant AND on a high steroid dose!

Ella was our nurse and Maria was our HCA. The morning went by fairly uneventfully.
Dan arrived bearing gifts…

Lovely Lego from everyone at Prentice. Thank you!

Lovely loom bands from Zita and the gang. Thank you Chloe and Ella x
I forgot to add yesterday
The retro sweets from cousins Esta, Isaac and Martha xx thanks guys!
The doctor came to look at his rash which has almost gone. She was very happy and said we needed to get back on track with his oral meds next week. The pred is definitely going to oral and dropping down tomorrow.

Herbie had a small meltdown over his one oral med and drinking. He literally lost it for about an hour! When obs were taken he was hot an sweaty and his blood pressure was high. Thankfully he calmed down. It’s horrible to see him out of control due to meds. A call came from my cousin to say she was in reception. When I popped down we exchanged a hug and she gave me some yummy body shop stuff.

The Moshi Monster mug miraculously returned so that was good.I think the new members of the ward are finally settling in. Robin is full right now!

I left after dinner. For the first time Herbie came to see me off. It was hard saying goodbye.

As I headed home , passing Madame Tussards my phone rang. Dan, apologising, sounding odd “really sorry I have bad news”

So it is that I am finishing tonight’s blog on a very sad note. Our new Robin Ward friends of the past 9+ weeks have today lost their little boy, Mason, only 15 months old , and such a fighter. Our thoughts are with Blake and Alex and their families. Life is fragile…Time on these wards just highlights this.

My final word for today is
venceremos xxxx

Simple Saturday pleasures

T+50!
Wow, 50 days since transplant, it’s really bizarre to think how long ago day zero was now as in many ways it seems like yesterday and then again it feels like another life!

A lovely lie in this morning until 9.30am. It seems there are some benefits to Herbie’s late nights! Weekends here at GOSH have such a different feel, as I know I have said before. The hospital itself is much quieter and obviously we have no teachers , no play specialists or volunteers visiting. This means spending more time in the room and much to my annoyance Herbie didn’t want to do any of the fun activities I envisaged to pass the time. He was basically going between his ipad and the TV! Amy was his nurse again today so he was very happy, although he did have a moan about the Nystatin. He has to have it 4 times a day and it’s his only oral drug at the moment, everything else is iv or through the PEG. The nystatin is for the black tongue he developed last week , thankfully the meds seem to be reducing it.

The ward has really changed in the last day or so with so many new people arriving. Next door we have another BMT patient so all three of the BMT patients are in a row. The other rooms are all immunology patients and we seem to have lots of new faces.
Sadly my friends are still in PICU, I miss seeing their friendly faces in the ward kitchen and have everything crossed that their sweet baby will be back in the ward soon x One of the main problems when new people arrive here is that the kitchen rules aren’t always explained. Sometimes this is because an interpreter is booked to come to explain and hasn’t yet. When we arrived here 8 weeks ago there was a problem with lots of food going missing. The set up in the kitchen is that it is shared between Robin and Fox parents, each patient gets a basket to keep things in one of the fridges (BMT patients have their food in the BMT kitchen on Fox Ward but their parents keep their food in Robin’s kitchen). There is also a space in the cupboards for a shelf per room of non fridge items. Yesterday when I went to get my mug (Dan and I have Moshi Monster mugs that we purchased especially for BMT) from the cupboard I noticed that Dan’s was missing from the shelf. I have hunted high and low but so far it has yet to turn up! There have also been times recently when new people have been seen rummaging through other peoples shelves, usually unaware that these items belong to someone! It’s very much like living in a shared house with calls of “Who ate my baked beans?”

The morning was spent on a couple of loom bands, Herbie helped, and then just various chatter and TV.

We talked about home and friends, he told me the things he wants to do when he gets home and we reminisced about last years holidays to St Ives and Dorset and camping trips with The Abbotts.

The Dr arrived quite late, which is usually a good sign as they seem to go to the most sick children first. Herbie poked his tongue out at her and blew raspberries at her and still she smiled and said he was so lovely?? She was very happy with his progress and suggested we return to oral pred (steroid ) on Monday and that the dose is lowered. We will also go back to doing meds ourselves.

We decided to head out a little earlier this evening as it was cool but dry. We went to Queens Square as we have the last few nights but then I suggested Russell Square where Dan and I had sat outside the cafe in the sun only weeks before. Herbie loved this idea. It was a much longer walk than he was used to but he did brilliantly. I did have a sudden panic when I realised that I had forgotten to take a urine pot with me incase he needed a wee but thankfully we were ok. When he saw the fountain through the railings he ran off in its direction. He was so excited!


He was absolutely fascinated by the fountain and I was able to sit on one of the surrounding benches whilst he ran around it, whooping with delight and joy. My heart soared!

He came to sit with me for a bit and we chatted again. He took of his hat. The new hair growth now very much in evidence.
“Did I still love him without hair?” The question broke the hazy idyllic moment with a razor sharp edge. “Of course, of course I still love you, long hair, short hair, no hair…makes no difference to how much I love you.” “But you always say you love boys with long hair?” “Yeah but I love Daddy and his isn’t long at all!”
I noticed a man who was reading his paper on the next bench look up and smile. Herbie ran back to the fountain.

As we walked back to the hospital I suddenly became aware of the responses of those around me, smiling at Herbie as we walked by, children staring at him and whispering to their parents, even strangers just saying hello as we left the park. I looked at my boy, he had removed his hat, the little Rice Krispie head was on show! That’s what it was all about. He walked confidently back, his peg hanging out from his hoodie, Hickman line swinging in a Baggie round his neck.we went back to Robin Ward via the vending machine to get his treat. This little ritual is one he loves now. He saves it until Skatoony starts at 9pm.

I spent the evening watching TV with Herbie until almost 11pm! He was full of it because we had a nurse from the ward that we hadn’t had before, Rose.

Time to rest my head x
Night all.

There’s always someone…

T+49 Friday was here! However I wasn’t heading home today so it wasn’t quite as exciting as usual. Herbie didn’t wake until 9.30pm and right from the word go, even in our filtered, air conditioned room it was humid. Outside the window stretched blue skies filled with wispy vapour trails from planes taking people to far off places. We however were staying put…again! Herbie was in a sunny mood that matched the glorious weather and eating and drinking well too. His smile got just a little wider as he noticed a nurse passing the window of his room. “Mummy I think I saw Amy the nurse out there” Herbie LOVES Amy, he hasn’t had her as his nurse for a long time and she had been on annual leave for 3 weeks but today she was back and even better, she was Herbie’s nurse! He was so happy to see her, although like Hayley, Amy was surprised to see us! At 11am Julia, one of the GOSH volunteers , arrived to ‘play Moshi’s ‘ with Herbie. He loves his sessions with Julia. They spend an hour or two each week looking through the Moshi directories (Herbie has 3 different ones!) and sorting Moshi’s. I left him in his element and headed out into the humid metropolis. Everywhere I looked I saw happy faces, people sitting outside cafés and pubs and restaurants and laying on rugs in the park. Seems the sunny disposition was not just Herbie’s today. It does hit you at these times though that your life is on hold, in a bubble and I was envious of the carefree laughter between friends, between couples and between parents and their children. The thing about Great Ormond Street and the adjoining streets though is that they are full of patients heading to and from the hospital, very quickly any moments of envy etc fade as you see parents and their severely disabled, disfigured and seriously ill children in the streets. What do people say? ” there’s always someone worse off than you” , well they are right. When I returned to Robin Ward and saw that little bald headed smiley face grinning from ear to ear I knew I was one of the lucky ones.
Herbie enjoyed his card and sweets from Aunty Lucy et all and the letter from Hope.

He tucked into and devoured a large portion of fish, chips and beans and shortly afterwards Dr Olga arrived. As usual she laughed with Herbie and he even, embarrassingly, smacked her bum! She was very pleased with his progress and said the larger doses of iv steroid would continue over the weekend and reduce on Monday and hopefully go back to oral. Jess the teacher came in as the doctors left and I had time to head out again. At the lift I bumped into a couple from the ward who I have become friends with over the past 8 weeks. They were headed to PICU where their little boy was transferred the day before after becoming more unwell. It’s funny how suddenly you feel so strongly for people you have really only just met. I haven’t really stopped thinking of them and their gorgeous little boy, who turned 1 in hospital. Please keep them in your thoughts, I hope they will be back on Robin ward ASAP x When I returned from my walk in the sunshine to the ward I saw another fellow BMT parent packed up and leaving. They had also arrived after us! Sigh…it has to be our turn soon. The afternoon was spent playing the Peppa Pig sports day app with Herbie and making a loom band. Dinner arrived at 4.30pm as usual and then after the two iv’s we headed outside. Herbie wanted to go back to Queens Park and blow bubbles again.

He also wanted to check out the book seat again (Pride and Prejudice) We headed over to look at the statue and also found a plaque commemorating the opening of the park.
Herbie skipped about chasing bubbles and then a grey squirrel.


We headed over to the other park to have a quick go on the slide and then headed back to GOSH to the vending machine.

With a kit kat in hand Herbie headed back to his room. There was lots of banter with the nurses before he went back in to room 2. A nice evening spent playing games and dancing and singing before he finally gave in to sleep at 10pm.

Bloods
HB 104 (yippee)
WCC 13.64
Neutrophils 11.01
Lymphocytes 1.16
Platelets 191
CRP 5

Sweet dreams all xxx