Tag Archives: Robin Ward

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.

image

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
Christmas 2013 with Claus McJingle

 

image

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.

image

 

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.

image

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!

image

 

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.

image

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.

image

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.

image

Herbie actually made the Nativity this year
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.

image image image

 

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
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!
image
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.
image

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

image

image

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!
image

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
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
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!
image
image

image

image

image

Herbie asked lots of nurses for photos

Sandra says goodbye to Herb
Sandra says goodbye to Herb

Sandra obliged but Herbie and Lucinda had a scrap!
image

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
Rehka and Herbie

They had a real giggle today.
image

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
Thanks Lily & Sam for the brill books and room decoration
Thank you Harry!
Thank you Harry!
Thanks Donna and Richard.
Thanks Donna and Richard.
Thanks Rachel, Ade, Sid and Archie.
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!
Thanks Jo, Richard, Elsie, Meg and Seren!
News from Floss!
News from Floss!

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

image
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.
image

There was also some superhero action.
image
image

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

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

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.

image

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
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.
image

image

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.
image
image
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!)
image

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
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