Tag Archives: Mummy

Please could you cough in the other direction? Thank you!


Thankfully I really haven’t had much to blog about recently which is a good thing! However I wanted to make sure that this part of the post transplant journey is still documented!

Herbie continues to attend school most mornings from 8.50-10.30am. He still LOVES it! He’s reunited with friends, teachers & his beloved Sully dressing up costume!


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We  had hoped that by now he would be doing mornings only but there have been a few, albeit minor,  spanners in the works.  We were sent an email  on January 19th  containing blood results and a note saying that immunology numbers were low  so we should remain vigilant and not up the school hours until further notice. This came as a blow because we really thought his numbers would be back up.  He was sad that the promise of longer days in school had been retracted  and it was hard on him. That said,  he is clever enough to understand how important it is that we adhere to Waseem’s wishes, however frustrating, as they are all with his best interests at heart. We’ve come too far to start taking silly chances.

School is , as you can imagine, a double edged sword. After all of those months (over 13) of not attending it is an absolute joy to see that beaming face each morning and to watch as he does the normal things. He  is often dressed and ready for school before I’m out of bed! He is keen to read every night and to do his homework. School brings him such joy.

As parents though it’s so much harder. My ‘illness’ & ‘germ’ sensors are heightened. Every cough sounds like a deafening gun shot in my ears and I find that children with green strings descending from their nose send me into a mild panic that I’ve never known before! I’m a primary school teacher for goodness sake, I’m used to the Winter terms being full of classes of children exhibiting symptoms like this but now the goal posts have changed. Now I’m a crusader, I’m always watching for signs of something that, mild and trivial to most children, could be potentially dangerous to mine.

School sent out a polite notice to parents asking for consideration, I was so grateful and happier still to hear that  parents were ringing up to report their child’s absence through illness & citing  Herbie as a reason for being overly cautious.  Still my nerves are on edge. I look at children wondering, have they had chicken pox or been exposed to it?  Did their parents vaccinate them? I never considered this before! When he’s not at school I try to break up the boredom of the day with trips to quiet child free places. These really don’t exist! Home schoolers, Pre schoolers and babies, again with barking coughs and snotty noses are in every nook and cranny.

“Keep him home then!” I hear you shout. Part of me wants to but this is a stage, like every other stage before it, that we need to face sensibly and with as much knowledge as we can. It too shall soon pass!

The medicines are still pretty much the same although we are weaning the steroid. As I type this he takes 5mg in the morning and 3mg in the evening.  We hope to wean off the evening dose very soon and then he will stay on 5mg daily as a holding dose whilst we wean ciclosporin . This is much later than most of the other children that went through transplant at the same time but Herbie’s immune deficiency is rare and as his particular version of it has never before been documented it means they must proceed with caution.

On a positive note, and to prove I don’t wrap him in cotton wool completely, we went to watch the local village panto, Ali Baba. The girls were in it again and Herbie was so keen to go. Thanks to Bryony & Caz Woodruff for ensuring us front row seats so that Herbie could come and see (and not be surrounded by germs!). Also a touching moment during the evening was when Jaimie Bunting, who played Ali’s mum ,(and he looked fab in a dress although the girls did wonder how they would keep a straight face in Geography the following week as he’s their teacher!) called Rufus & Herbie up to the stage for a ‘shout out’.

Herbie loved every minute of the evening and couldn’t wait to get on the stage himself!



Other highlights have been learning that our fundraising for GOSH continues to grow, putting us in the top 1% of fundraisers



Herbie continues to hear from the wonderful Hope , who sent a fab birthday card and gift of Moshi gloves and hat etc just in time for the cold snap. Thank you Hope!

We hope to update again with more positive news soon. In the mean time I wish you a happy and healthy February…



He’s a champ!


My mobile let out the train whistle sound at 7.13am this morning and woke me with a start. For a split second my heart was in my mouth. The train whistle ring tone is reserved only for Dan. Herbie chose it when I got my first iPhone when he was just getting into trains. What was Dan’s message going to say?

It could be good news, no fevers, coming home etc but then again it was early, maybe Dan needed to offload a bad night?  I can’t explain how it feels to be so torn about where to be when one of your children is in hospital. Despite always wanting to be with Herbie 24 hours a day throughout his hospital experiences I need to go home for two main reasons.

1) we have three other young children at home who need me

2) you sometimes need to recharge the batteries to have strength and courage for the next steps

However leaving causing more stress at times, I’m not great at not knowing exactly what is going on and Dan often, and he’d be the first to admit this, doesn’t always take in what the doctors say.

So…when I heard the ringtone telling me a message was there from Dan I hesitated , just momentarily, wondering what news was winging it’s way to me. It was this…


I was so relieved! I counted the hours, just shy of twelve since the last spike. If you have followed my blog throughout transplant you will know that this means nothing for the Herbster, back in GOSH just when we thought the spikes were over they returned. However I remained optimistic and was able to start the day with a bigger smile than the day before!
Further texts confirmed he was up, dressed and watching the LEGO movie, for the umpteenth time!

I know that we were incredibly fortunate to have a sibling donor in Rufus but once again let me stress just how much lives can be changed by having a bone marrow match. Not just the recipient but those around them that love them. Anthony Nolan were highlighting this again today on their Facebook page. I was pleased to see that the boy highlighted not only made a full recovery from transplant in GOSH three years ago but was a PID patient. He had Chronic Granulomatous Disorder, like Herb & Lily’s NEMO it is extremely rare. We met a family during our time in GOSH whose son was also suffering from this, thankfully he was also found a donor through Anthony Nolan. Many people who hear the words Bone marrow transplant automatically assume cancer and leukaemia are the reasons for needing one. They often are, but more and more Primary Immune Deficiency patients are also being treated like Herbie and lots of the children we met on Fox and Robin Wards at GOSH. If you think you could be a donor please investigate further and to my friends and followers who are from the ethnic minority communities your help is even more precious as the are less registered donors but still the need. Like our other GOSH friend Milan.

As well as being a bone marrow donor I have also often blogged about the need for blood donors and platelet donors. Herbie required more platelets again today, the fevers and cystitis had given his a bit of a hammering again, second transfusion in less than a week.
It’s a big thing to the recipients. Go register!

So after some quality time with the three of the Fab Four and a little retail therapy I headed back down the A40 to the JR with a happier outlook.
Dan had let me know that Herbie was still afebrile and he was drinking again and eating a little. All positive signs!

When I arrived my small Rice Krispie sat on the bed frowning and said “about time too”, the cheek was back. He looked so much better than yesterday and he was definitely brighter and was back singing and playing games. I heard about a visit from Victoria his outreach teacher and the lovely Bellhouse Drayson Ward Play Specialists with team Herb badges which Herbie was extremely proud of! They are so awesome! He also had a crown too! So pleased that Lily and Kitty did so well with the fundraising for Bellhouse Drayson (with thanks to Auntie Cathy too!) The girls have lots of fab toys for them.
Lily is already planning the next fundraising activity for the JR!

Apparently, according to Herbie, the badges were much sort after…Dr Liam, who had visited and Teresa ,his nurse ,both wanted one he said. “Put them in your bag and take them home” he whispered “because I need to give them to my best friends Sam and Lily, Libby and James.” So it appeared even his own family were not allowed them! “I need my friends on my team too” he explained.


Another thing to celebrate is his hair growth! Very exciting! My long haired boy will be back before I know it! My little Rice Krispie really is becoming Baby Pineapple (Lily’s nickname for him) with his spiky top!

This weekend sees a friend’s daughter shave her head for charity. It’s her 12th birthday and she is giving her hair as a gift to a wig making charity? Such a courageous thing to do. Drop by at the a Turner Hall in North Leigh this Saturday to be part of her big fundraising day. Shannon is pictured below with her lovely mum Sarah and our dear friend Leigh whose son and our ‘adoptive nephew’ Hugo also lost his hair during his battle with ALL (Leukaemia ). Thankfully he is now recovered and sporting a rather amazing head of curls!

So I left Herbie with a dairylea dunker and no temperature, 100% SATS and the knowledge that he seemed to have turned a corner today, even the cystitis is greatly improved with just a trace of blood measuring in his wee now (and not an oestrogen patch to be seen yet!)
It feels like we are winning. As nothing has grown yet he needs to complete the antibiotic course, this may make going home tricky but we will see.
The pump has arrived for the water at home, we just need our Small back!

HO HO HO …it’s drawing nearer


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.

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

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 …
I just can’t say it! Fingers crossed xxxx

Boy about town


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!


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
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
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
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!


Here comes the sunshine, here comes that son of mine…

T+21…we are 3 weeks post transplant! Whoop whoop!

I woke and the sun was shining and it felt like the day would be a good one. Only one day out of the thirty days we have been there have we not woken and opened all of the curtains in the room. I can’t imagine living in one room for 8 weeks and not letting daylight in but lots of others on the ward do just that.

Herbie also woke with a sunny smile and no longer seemed in any pain. This meant that we no longer needed a visit from the ‘Tissue viability’ Team. Yes they have teams for everything at Great Ormond Street.
I can’t really put into words how I feel on mornings like this, mornings when my baby boy seems to be his usual , happy , cheeky self. We came into transplant after months of illness and worry with our boy almost back to himself only to make him unwell again. So to see him like he was today was wonderful.

Helena came into the room to clean. She commented immediately “he’s back to himself huh? The lovely boy is back right? That make me so happy, lovely lovely boy”
Herbie actually blushed!

Herbie had his bath and listened to music as is the routine. Thankfully today I didn’t get the plug stuck. We were barely out, dried and dressed before Maria came in with the blood results.

HB 74
WCC 1.38
Neutrophils 0.93
Lymphocytes 0.14
Platelets 83

The HB was very low as Herbie didn’t get his transfusion over night as there was a mix up with the order. White cell count & neutrophils had dropped. Because neutrophils were under 1 again he would have GC-SF again. Lymphocytes had climbed again but we really need them to start climbing a little faster. Platelets were obviously better since transfusion.

The doctor came in and said all was going well, the iv ciclosporin would stop on Monday probably and hopefully we would have news on the graft by then too.

Bev came with post.
A Moshi book from cousins Esta, Isaac & Martha was so exciting that he almost forgot to open the other things!
Thankfully he was lured away by his inquisitive nature!
Victoria, his awesome outreach teacher sent loads of fun stuff, the jumping beans, bubbles, whoopee cushion and hand buzzer and finger guillotine caused great delight and a few nurses were caught out too. He misses you too Victoria and wondered if Finlay knew about him losing his hair too x (thank you for thinking of me too xxx).
Rachel, Sid & Archie sent us both loads of lovely things. I felt quite emotional reading the story that Archie wrote for Herbie and the letter/card Rachel wrote to us. I am so lucky to be surrounded by such caring people. Herbie LOVED the first instalment of the story Archie and was excited to hear your favourite Moshi choices.
Katie & boys , thank you for the goodies, can you believe he ate all three packets of buttons in one go! I was thrilled his appetite is returning.
Amy & crew ..perfect choices again and he loved the Lego card, it’s up on the door!
We emailed Herbie’s Class with some photos and then Herbie had a rest in front of the TV.

Another of the GOSH volunteers came in, she had seen him last week and played Moshi’s and was keen to play again! I stepped out into the bustle of a sunny Friday in the capital. I walked around before heading for a cup of tea in Costa courtesy of lovely friends x

I returned to find today’s nurse , Sandra, giving some iv’s and a few oral meds. No blood still, it was likely to be during the night now. Herbie had a little sad moment when he realised that I was swapping with Daddy. “It’s not that I don’t want Daddy” he sniffed “but I want you too”
Talk about tugging at the heart strings…

Dan arrived and came with more goodies from home. Moshi clothes and goodies from his Aunties and Uncles and cousins.
and a special good luck charm from Turkey from George & Lauren. He put it on the bedside table to watch over him. Thank you.
Moshi excitement from Evie and her mum and then it was time for the teacher!
Dan and I left the hospital for an hour and bumped into another BMT patient and her mum waiting in the reception to go home. They had been in just under 8 weeks. This was a great thing to see, it made it feel within our reach too.

Soon it was time to say goodbye to my boy for a few days as I headed back to The Shire.
So much easier than last week to go home knowing that he was bright and on track but still a wrench.

So I left the boys to their weekend of football and games.
I’m missing them already. They have Amy tonight as their nurse, one of Herbie’s favourites.
I wonder what tomorrow’s blood results will show?

Dare to be optimistic?

T+16 started earlier in Room 2 of Robin Ward than it did back in the Shire! The boys woke and did the usual routine, weighing, measuring etc (although Dan did mess up slightly by weighing Herbie AFTER breakfast!) .

We were now 48 hours post fever and things were definitely looking promising that we were moving on. The ward has been extremely understaffed the last few days due to illness. I’m sure you can appreciate that working on a BMT ward there can be no risks taken with any sniffle etc that could pose a threat to the immunocompromised patients. Today Herbie was cared for by a nurse from ‘upstairs’… This is where Rufus was a few weeks ago on the Oncology Wards. Obviously the speciality BMT and Oncology nurses are quite similar in that they are dealing with isolated patients with low immune systems and complex meds including chemo so they can help each other out more easily.

Herbie breakfasted well, a sign that his appetite is returning and then the boys settled down to some jigsaw puzzle action!

It’s seems apt at this part of our journey to talk about the effects of separation on our family. I have often wondered how friends of mine with partners in the Armed Forces or who have jobs that take them abroad for periods of time cope. Our family spend most of our free time at home together and it’s what we love as a family. So the fact that we have not actually been together as a family for almost 4 weeks is tough. There is no one place as the adult to be that is better than the other. When you are caring for Herbie you think about home, the children , the normal things you could be doing and you miss them. Dan and I miss waking up next to each other, sitting on the sofa watching TV, basically just being around one another. However , leaving Herbie is also tough. It is why we have decided that Friday and Mondays will be cross over points where we spend time with each other before swapping locations. The children too are finding it difficult (although I am actually amazed by their strength and maturity in dealing with this problem.) Tonight when I face timed Herbie I could see the glint in his eye when I said I’m back with you tomorrow, he even gave a small cheer and yet also the look of sadness in the 3 pairs of blue eyes sitting next to me. Kitty said “I really want Daddy to come home tomorrow but I’m sad too because you can’t stay with us. Dan also text me saying the time spent with Herbie this weekend had made him reflect on how our family had been all over the place for over a year with long hospital visits but that this BMT offered us hope of a stable future.

The blood results were eagerly awaited as always now.
HB 82 (close to transfusion level)
WCC 1.19 (down as suspected but still good )
Neutrophils 0.95 (again dipped a little but we were told to expect that)
Lymphocytes 0.13 (climbing!)
Platelets 60 ( yay…fever free for 48 hours has helped stop the depletion)
CRP 90 so on its way back down!

The doctor on this weekend was very pleased, especially that the CRP is coming down.

Herb has developed a slight rash on his arm, the doctor said it shows the cells Ru gave are working but it’s an annoyance so he’s been given steroid cream.
They also felt he’d had a bit too much fluid over the last 24 hrs etc, what with water boluses and feeds & so many iv’s as well as drinking himself they gave him something for it and he’s weeing for England now!

In other news I was given lots of gifts etc for Herbs to take back today, they will feature tomorrow but a shout out to our dear friends Vic, Kev, Owen & Stewart, Kev’s mum and dad, also ours friends, Brenda & Steve and Maddie & Ant , Frankie, Archie & Chester for the lovely gifts they sent to Ru & the girls and the Costa card for Dan & myself. Herbs gets his tomorrow!

Herbie was in fine form today, I’m back on duty tomorrow so see you on T+17, when hopefully the good news will continue.
Still remembering for every good day, it’s one less bad x



Courage is the most important of all virtues

T+15…first day of the “Boy’s weekend”

Herbie woke late today. Dan was advised to let him sleep so he did. When he finally woke he was cool and able to do the daily drill, bath, weight, measurements and moisturising and even have some breakfast.
His skin was a little dry in the places it had been itchy and more of his hair came out in the bath but he was good.
He had at this point managed to go 30 hours fever free! Whoop whoop!

Obviously no fever means that he will be more alert and able to do more so finally after a week of having it on his daily ‘to do list’ that we write each evening together (Just to give some rough structure to his day) , Herbie & Daddy managed to start and even finish the Muppets jigsaw puzzle!
Things were definitely more promising than they had been earlier in the week.

Maxine was his nurse today and she is one of the more senior nurses on Robin Ward. One thing they are all good at but Maxine is excellent at is telling you which drug is being given and over how long. We both really like to know where we are at in his drug schedule as there are so many!
Herbie would also need platelets later on today as his levels had slipped again.

Temperature, SATs and blood pressure all behaved during the day and he was even eating some meals and drinking. All excellent news. He still remained quieter than usual but it’s important to remind yourself again that you are going through an incredibly massive procedure, there will be good and there will be bad days. Big power struggles will be going on inside his little body. Ru’s cells will be trying to oust Herbie’s and even with a 10/10 match the host cells won’t take it lying down!

As you know I left to return to the Shire for the first time since May 6th. It was an incredibly emotional wrench to leave Herbie at this time but it’s also an incredible heartbreak to be away from my other three babies. I went to bed with a splitting headache last night & woke with one too. I dreamt all sorts of strange dreams and realised this morning just how exhausted I was!
I’ve had a good day with the other three kids, they have spent vouchers that people have sent for books, WHsmiths etc today and we went to a cafe and then chose nice food for dinner. Our lovely family friends Dave & Christine also gave the children money to go to The Shake Shop, the children decided to save it for next weekend as it spreads out the fun and gives them things to look forward to whilst I am away next week. We finished the evening watching Swallows & Amazons on DVD, thanks to the lovely Em, Jonny ,Stan & Jed. Finally we settled down to read together, we chose an old fave of my childhood, Charlotte Sometimes. Kitty had purchased it today thanks to Gay & Colin.


The blood results were eagerly awaited today after yesterday’s consultant round and the GCSF that was given to boost the production of neutrophils.

Drum roll please…

HB 83 (probably looking at a transfusion in the next day or so)
WCC 1.23
Neutrophils 1.05
Lymphocytes 0.06
Platelets 27 (platelet transfusion already scheduled)

A big jump for WCC & neutrophils, this will no doubt drop tomorrow so we can only be tentatively excited but they have all really jumped up! No GCSF tonight so we will see how it goes.

The dr came in and was really happy with how things were, especially the lack of fevers. So that too was positive news.
She expected to see his CRP reduce now.
CRP is the test to show inflammation in the body which can be caused by infection. The numbers increase as the inflammation/ infection progresses. It was around 147 last time it was done I think.

Herbie slept after his lunch and then woke to watch TV etc.
Then he had a Hotdog for tea and watched some Adventure Time on TV before it was time for his Platelets and milk feed.


Finally it was bed time for Herbie. Fingers crossed that T+16 continues to go our way. We always remember that Nikki told us , for every good day it means one less bad.
Today just gave us one more mark on the plus side! I’ll leave the blog today with a quote from the wonderful Maya Angelou

Courage is the most important of all the virtues, because without courage you can’t practice any other virtue consistently.

Today gives us courage to go forward to tomorrow x