Category Archives: learning

Happy Mothers Day, Happy Birthday and WOW WOW, unbelieveable!

T+128

I have so much to write about that I’m not sure where to begin? So in the wise words of the King in Alice in Wonderland I’ll ” begin at the beginning and go on until I come to the end.”

Last Sunday Dan left for Wembley accompanied by my sister Charlie, my brother in law Joffy, Dan’s sister Lucy and our sister in law Wend and their solitary cheerleader , my brother in law, Mat. They were heading to the Sure Run to the Beat 2014 where they completed a 10k run. They managed to raise over £6,000 in sponsorship for Great Ormond Street Hospital Charity which was amazing.

Herbie's Dream Team
Herbie’s Dream Team

With that success in the bag the week continued in a positive mode. Monday was Herbie’s IVIG infusion day which meant an 8.30am appointment at the JR in Daycare. The traffic was bad and we arrived almost 25 minutes late but the nurses reassured us that it wasn’t a problem. Herbie also needed bloods taken for his weekly blood levels, ciclosporin levels, amikacin levels and, this week only, he needed the first of his line cultures to check for a line infection.
Although we had arrived at 9am by 10am nothing had happened. As 11am approached a student nurse popped in to do a set of obs. I pointed out that we had another appointment with community nurses at home at 2.30pm (IVIG takes about 3 hours to infuse). Although the nurses smiled sweetly nothing seemed to happen! Herbie was beginning to get rather fed up and so was I , finally at 12.50pm the bloods were taken! Nearly 4 hours after we arrived! The Gammaplex went up. It has to be given over 3 hours with the rate increasing over time if tolerated. Herbie sometimes gets back pain and despite Piriton he got it this time.the gammaplex kept getting air in the line as it was so frothy and so the alarms kept going off and it took ages!
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We finally left the JR at 4.45pm and were home for 5.30pm , after battling Oxford’s rush hour, and greeted by the community nurse Sarah who was setting up his iv’s!
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Herbie has remained fever free since my last entry and this means that we are now 18 days at home. Doesn’t sound much but the amazing fact is that that is the longest time spent at home since transplant!

Back in January of this year Herbie turned 5. He was in the JR and had a blood transfusion on that day. He had wanted a new green maxi micro scooter but we didn’t get one for his birthday as he was so unwell. Finally, at the grand old age of 5 years and 8 months Herbie was able to finally take ownership of a brand new, green, scooter! Happy belated birthday to my gorgeous boy. He loved scooting around the village on it!

Happy birthday (+8 months!) Herbalicious
Happy birthday (+8 months!) Herbalicious

First scoot on the new wheels
First scoot on the new wheels

However, as always he overdid it and got ‘tummy ache’ resulting in an hour of lethargy.
When Victoria, his outreach teacher, arrived he was not very responsive which was sad.
Herbie wasn’t the only one to have a late celebration. I finally got to use my Mother’s Day 2013 (no that isn’t a typo) voucher on Thursday and had a wonderful hour of pampering at The Junction in Witney. Happy Mother’s Day 2013 to me! I really needed that hour, it was a great recharge for my running on empty batteries!

As I type I can confirm that so far the line cultures are still negative for infection. Based on the fact that fevers have stopped that is hardly a surprise. The GVHD has resolved leaving his skin a tad blotchy (nothing new there!) and a little dry but nothing extra moisturising won’t cure. He is meeting fluid targets and thankfully hasn’t had an over night water bolus for weeks and no over night feed since his time in GOS. His meds remain unchanged but his bloods are looking much better again which we hope means that we are no longer derailed and are back on schedule.

HB 12.2
WCC 5.93
Neutrophils 5.16
Lymphocytes 0.30
Platelets 220

His HB and Platelets are fab, no transfusions for months, neutrophils & WCC back in normal range and lymphocytes coming back up nicely. Fingers crossed these improvements continue. Next bloods are Monday.

Herbie is enjoying the return of his outreach teaching. One hour a day again but this term he’s got a job share which is nice for him. New faces are always welcomed when you are home most of the time with restricted visitors. This week ,in keeping with his school theme, we made some soup. It was yummy!
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Dan and I are tentatively thinking ahead. It’s still very early days to make plans but we have so many lovely treats awaiting us courtesy of lovely friends and family that we finally feel we could think about using. Tea and cake at Huffkins, meals at The Fishes, The Chequers Smokehouse (a recent addition from my lovely work colleagues), afternoon tea at The Randolph and a meal at Cafe Rouge. Hopefully fun times ahead at last!

Friday was the eagerly anticipated Kate Bush gig. As previously blogged a wonderfully generous member of my family had offered us tickets way back in the year and it’s been pulling me through transplant ever since. Last week it transpired that only one of us would be able to make it after all as Sam’s name was printed on the tickets and photo id was required. Obviously we were disappointed but Dan, knowing that I have been a fan since she appeared in the seventies said I needed to go. Sam had done all he could via phone calls etc to try to get around the restrictions but had hit a brick wall.
Dan decided to come with me but go to the cinema whilst I went with Sam to see Kate! Traffic was awful and we arrived late to meet Sam who had been waiting outside the venue for at least 45 minutes! He asked us to try to get in together although signs everywhere screamed at us to get the photo Id ready. As expected the guy on the door said no entry without ID and we explained that we were with the ticket owner. Sam showed his ID and we were in! Sam didn’t get to see her in the end and I was totally overwhelmed by his generosity and thoughtfulness xxx We had an amazing night, The nineth wave was amazing and we were treated to a night that overloaded our senses, made me laugh and (for the first time ever) made me cry ( Running up that hill just transports me back to transplant now). All I can say is WOW WOW WOW WOW…UNBELIEVEABLE!

So I end this blog entry , 128 days post transplant, in a very positive place and feeling like I am on the edge of the diving board, about to plunge into the next pool. Hopefully this one is full of warm, crystal blue water and we can wallow there for a while.

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Taking the scenic route

Herbie had been really on top form since his last hospital stay and we honestly felt the best since transplant. Energy levels were great, eating well, drinking his target of 1600ml without problem and temperature staying below 36.5. We discussed regularly in the evening how things seemed on track at last.
T+108 came and I was greeted at 7.30am by a smiley boy, already dressed and on top form. I remarked to Dan how good it felt seeing him back to his old self every morning. Dan gave the 8am meds and headed off for a run. He has the 2014 Run to the Beat 10k for Great Ormond Street this month.
As soon as he had left Herbie complained of tummy ache. Now he does take lots of meds at 8am, 8 different ones, so occasionally he moans about tummy ache. I gave it half and hour but by then he was holding his tummy and quite upset. I took his temperature, 36.4, perfect, so gave him calpol for his tummy.
Dan returned from his run to find a little boy doubled up on the sofa, wincing saying “it really hurts, that calpol is rubbish”
I took his temperature, 37.5 suddenly…it felt like a rerun of the last time we were admitted. His temperature hit 38 and that, as we all know, automatically starts the admission and TAZ protocol (AGAIN) for a line infection. That means 48 hours in hospital even though I think everybody knew it wasn’t a line infection!

The timing of this admission was dreadful, the following day the twins were due to start secondary school, I still hadn’t managed to get shoes or trainers that would fit Kitty and Rufus started back a day later so we needed someone to look after him if we were in hospital.
There were many tears shed as I said we needed to contact GOS. However Herb just said “can I take Dogdog and my pillow please’
I was sad in one way that he’s resigned to going back in but happy in another that he wasn’t kicking up a fuss.

He slept on the hospital bed as soon as we arrived. He was very hot but once cultures were taken from his line he was given calpol. However he threw up and it was decided he needed it iv to ensure the temperature came down. His skin was getting very blotchy and Dan and I realised quite quickly that this was probably GVHD again. Our worry was that it was also in the gut.
The JR consulted with GOS and an ultrasound was ordered to see what was going on in there.
I had to leave to get back home to sort out the girls ready for Secondary school. Dan took him off for ultrasound, he was laid out on his bed, hot and asleep. I felt awful leaving but the girls needed me.

That evening Dan reported that the paracetamol had kicked in and Herbie was bright and cool and happy. The ultra sound was ‘unremarkable’ and nothing was a worry to the doctors. This was great news but it was agreed by all that this was GVHD rearing it’s ugly head again. This is annoying as Herb is in the lowest category to get it really, sibling matched donor, 10/10 match, same blood group so no changing of blood group, same gender donor!

Still, it was a relief that the ultrasound looked good and they upped the steroid again(we had just weaned that too!) to counteract the GVHD.
Once the temperature was gone he was ‘old Herb’ just a little blotchier!
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Still blowing raspberries at the doctors (and some poor nurses!) but always happy to see the ward play specialists Grace & Sam and Juliet the hospital school teacher!
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By the evening it was decided, in consultation with GOS, that if temps stayed away, culture were negative and GVHD under control he could stop the TAZ in the morning and could go home on Wednesday.

Day T+110
Wednesday arrived, the three others were all packed off to school sporting new uniforms and with much excitement and I headed to the JR again.
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I swapped with Dan, who went straight off to do some work, and arrived in Room 25 (yes we are in that room again!) to find it full of doctors! Herbie was holding court! The doctor in charge said that the iv’s were to continue, which was not what we had thought was happening, and that we MIGHT go home today! Grrrrrrrrrrr
They also wanted a repeat ciclosporin level as it was only 50 on Monday and it should be between 100-150. Ciclosporin is one of the immune suppressants and if levels go too low it can cause GVHD. However the level was taken almost 24 hours after the last dose given which is probably why it was low! Annoyingly though they only told us they needed a level at 10am, so his 8am dose had been given! This meant staying until 6pm.

Luckily Juliet came twice to do science and maths with him which he loved and she commented on how well he had come on with his reading etc since January.

Working with Juliet
Working with Juliet

Herbie continues to be blotchy but thankfully it isn’t getting worse or too itchy. It’s not pleasant to look at but he’s in great spirits. More importantly…he’s upstairs asleep in his own bed! Yes we are finally home again. Now I’m not a gambling person but anyone placing bets on when the next stop at the local might be? Herbie is just like his dad, never takes the motorway when he can take the longer, windier and more complicated ‘scenic route’

Bloods
HB 11.5
Platelets 75 (annoyingly they drop with fevers)
WBC 3.5
Neutrophils 3.29
Lymphocytes 0.11 (dropped quite low again!)

GVHD
GVHD

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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.
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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

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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.
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There was also some superhero action.
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Sarah , one of the HCAs , looked after him tonight. She also looked after Lily this time last year!
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After our late night Skatoony episodes Herbie escaped onto the ward! He was hilarious and loud!
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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!
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Tomorrow is another day closer …
HO! HO! HO!
I just can’t say it! Fingers crossed xxxx

The changing of the guard

T+24. The changing of the guard as I arrived back in GOSH and Dan returned to the shire. Almost 5 weeks since we arrived at Great Ormond Street to begin the BMT journey. Another week notched up and a new week under way. By the time I arrived back in London the Monday morning routines were complete , NPA done and Herbie was with the teacher, although today he had Danielle, his ‘Friday’ teacher as Helen wasn’t well. Dan and I caught up in Costa (thank you Gay & Colin x) and on the way back in to the hospital saw Catey with the camera and had a brief catch up. How lovely to see my boy again after a few days away, especially looking happy and cheeky. I arrived to find him enjoying a windfall of mail of this sunny Monday!

Thank you Mary & Larry x
Thank you Mary & Larry x

A parcel from America caused great delight, he was particularly thrilled with Batman and announced “How funny that in America they have a doll of me dressed as Batman! It is me isn’t it mummy?”

Thank you Uncle Sam & Auntie Pam
Thank you Uncle Sam & Auntie Pam

A big thank you to Pam & Sam for this amazing pop up book of London. We all love it!

Thank you Maureen & David
Thank you Maureen & David

Lots of lovely stickers from Grandma & Grandpa’s friends, and

Thank you Jo and family
Thank you Jo and family

Daddy can’t wait to get started on the World c sticker book from Auntie Charlie’s friend Jo & her family.

"Look at this one mummy"
“Look at this one mummy”

Gay sent a lovely letter and Moshi cards for Herbie.

Thank you Oliver
Thank you Oliver

brilliant Moshi goodies arrived from Oliver at school, and Ethan used his own pocket money to purchase a gift! How sweet is that! image

Thank you Isobel!  Xxx
Thank you Isobel! Xxx

Isobel sent brilliant Lego figures, two he didn’t have! “She’s very clever” he said

Thanks Mark, Mel, Ethan and  James x
Thanks Mark, Mel, Ethan and James x

The robofish will be a welcome edition to the bath tomorrow!

Bloods were in

HB 96
WCC 1.35
Neutrophils 0.68
Lymphocytes 0.30
Platelets 77

The neutrophils had slipped back again under 1 so despite saying they wouldn’t give GC-SF again he had it tonight!
Engraftment bloods went off again today, we didn’t ever hear about the other that were supposedly taken but results from today should be back in 48 hours!

The kidney function was still a bit skewed so it was another drink frenzy. Sadly we didn’t make target, despite drinking until 10pm bless him whilst we read the new books from Jo Fisher & family and Mary. So a milk feed is up now.
Hoŵever on a positive note the ciclosporin is now oral too so we really only have three iv’s.

He is doing so well, tomorrow is superhero day at school, Herbie will play a part in that hopefully from a distance. Mimi and Papa are visiting and I need to get him to drink almost two litres! Busy busy busy!

Herbie asked again tonight
“When will I get to go outside, I want to as I can’t remember it”

Soon Small, I feel a change on the wind and I think it’s closer than ever.

Whole lotta love going down…

T+5 ( it really is this time!) … 5 days post transplant.

After complaining about his mouth last night I was worried what he might be like on waking this morning.  He woke without mentioning it at all. He said his tummy hurt a little but that soon passed as well. when we asked about his mouth later on he looked bemused! “Oh that’s fine now” he muttered!

Usual daily routine ensued, morning iv’s completed it was time for a bath.  Whilst Dan sorted that out I began tidying the room. It’s only small  and needs keeping in order every day  but I like that. This time next week I will be doing all of this on my own but that’s ok. The days will be full!

The post arrived and  well…what can I say?  I really am overwhelmed by the love and care  and concern shown by family , friends and people who don’t really know us !

Two huge gift wrapped boxes caused the big stir at the nurses station, but then the post trolley was emptied and it was all for Herbie!  We staggered the opening today throughout the day.

The big boxes first. Jam packed full of Moshi goodness from our old friends Em, Jonny and their boys , Stan & Jed. Herbie could hardly contain the excitement as he opened  the parcel and pulled out a plethora of goodies. The cards were awesome and Herbie loved the messages inside. He replies to Jed, “yes please, I would love to come to the patch when I’m better x” and also that he does like the Rolling Stones and he has a t shirt with them on.  To Stan, ” yes the snot test is yucky and I hope you never have to have one! ” There was also a parcel for me, that lovely friend knew  just what I needed, intensive hand cream and a string of pretty lights xxxxx

Thanks Em, Jonny, Stan and Jed xxxx
Thanks Em, Jonny, Stan and Jed xxxx
Thanks Em , Jonny, Jed & Stan and also thanks Gay & Colin.
Thanks Em , Jonny, Jed & Stan and also thanks Gay & Colin.

Next a lovely card from my friend Gay with a Costa card for us and a comic for Herbie.
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At this point the teacher, Helen, arrived and that was our cue to leave and get fresh air. The day was still young, sunny and it was almost time for lunch so we headed out to Costa armed with our card!

On our return we found Herbie in the grips of a Super Hero frenzy with Helen. He had two lovely books from the Readwell project, which we have accessed before in the JR on numerous occasions. We enjoyed them again later on in the day in a peaceful moment! http://www.readwell.org.uk
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Herbie was keen to continue with his envelopes after his tummy was full of ravioli and banana bread!
The first envelope contained more lovely pictures from best buddies Lily & Sam. I am always a little touched when he opens post from his best friends as he becomes quite reflective and today was no exception. “I miss my friends so much mummy, I want to go home and go back to school.”
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Lily & Sam’s letters reiterated Herbie’s sentiments, more heart strings pulled! The Batman jigsaw and Transformer however cheered up the little face as did the photos of his friends x

Thank you Emma Frame
Thank you Emma Frame

The next parcel was from someone that we haven’t met. This is the kind of kindness that I was talking about earlier. A person who also shares a Primary Immune Deficiency feels enough care and concern about someone that they haven’t met to send them a card and gifts. Emma, thank you so much and we hope that your PID is controlled and that you are well and happy xx Your kindness made Herbie very happy today. He was particularly excited by the fizzing Moshi bomb which he hasn’t had before and loved!

Thanks Jacob!
Thanks Jacob!

More correspondence from fellow classmate, Jacob, raised smiles and reignited conversations of school and friends and added to his Moshi collection!
Belinda and family we need to also thank you for the fab Moshi stuff, here is a sample of some of it and Herbie says “everything is awesome!” He also can’t wait to spend his token and the others are thrilled with theirs too! Oh and we are off to Starbucks tomorrow at 11.30 courtesy of you xxxxx
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Thank you Hannah
Thank you Hannah

The card and Moshi above were from PIDUK’s Hannah who has been sharing news with supporters of Herbie’s progress and shared our blog etc. She also shares a favourite immunology nurse, Nicola! Thanks and love to you Hannah. (Herbie says ‘I don’t have that Moshling…you picked brilliantly!). Also enclosed was a great card from PIDUK wishing Herbie all the best too.
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I’ve told you about PIDUK before but I will say again that it’s website is well worth a visit, so many people suffer with immune deficiency and for many it can be quite overwhelming. Raising awareness can help with treatment but more importantly early diagnosis. My dear friends Sam & Ricky will be raising money for them in a memorial pool event this month in memory of their son, Liam, who was in my very first class as a newly qualified teacher. I am grateful to them for supporting this cause close to my heart.
http://www.piduk.org
Happiness is a letter from Hope
Happiness is a letter from Hope

The last envelope opened was another letter from Hope. Hope is another 5 year old (although soon to be 6!) that has written to Herbie every week for a few weeks now. He really does love getting her letters and hearing all about her week. Herbie wishes you a very happy birthday Hope and says the cakes looked cool but he loved the get well gifts you sent instead (and he thinks you are right a cake may have been squished in the post).

With the post open and Dan off out for the afternoon , Herbie and I decided to have some Moshi fun with the treehouse and his Moshi’s. However we had just settled down when Laura , one of the play specialists arrived. Herbie really enjoyed teaching her all about Moshi’s as she knew nothing! (And I got to slip out to the kitchen to make a quick cup of tea).
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The rest of the day was spent chatting, reading books and playing games.
Daddy returned and the whiteboard filled up with information and jobs done. The day staff said their goodbyes at 8.20pm, Lucinda and Kelsey had been looking after Herb today and he had spent the day telling them that they were not posh…he’s so cheeky! Amy was back as his nurse tonight, he adores Amy! His eyes go twinkly when he sees her! She is incredibly nice.
The nurses are fab here on BMT, you do get to feel like it’s a family on this ward.

T+4 board
T+4 board

I feel I must also share the fab cake that my sister in law has made for my little super hero donor back home at his request! Isn’t it fab?

Superhero cake for Ru
Superhero cake for Ru

Blood results today were as follows (again for Mrs A and also Grandpa!)
HB 97
WCC 0.53
Neutrophils 0.45
Lymphocytes 0.02
Platelets 200

So the neutrophils & lymphocytes are almost at 0 which is where we expect them to be. HB & Platelets still not in transfusion range.

One more gift was given this evening. Our talented photographer friends, Charis & Owen Warrell of http://www.oacphotography.com
have offered to photograph our family when we are all reunited and well. We are so grateful to them x

So as the night drew in I plastered my hands in hand cream, turned on my lights and Herbie’s light and sat in the dark until Dan left for his room.
It was really pretty, thanks again Em & Helen.

Mummy's lights by her bed
Mummy’s lights by her bed
Herbie's lights
Herbie’s lights

Tomorrow is T+6, bracing ourselves for T+7 onwards as his counts drop. However I am happy because I know we have the most amazing network of family, friends and even people we haven’t met supporting us from near and far.
There really is a whole lot of love out there…thank you xxx

Why are you giving me something toxic?

Day T-8. A bright and early 6am start! Ugh! Anyone who knows me knows that 6am is Dan’s hour, I am usually sleeping soundly. Dan was in parent accommodation in the Italian Building though so when Small woke bright and early I had no choice but to follow suit! His nurse Amy arrived with morning meds and he had a mini melt down announcing that he hated the ward, hated Great a Ormond Street! This required serious Moshi bribery & so by 8am Herbie was the proud owner of a Moshling Zoo & I was wishing I had just purchased a shed load of Moshi blind bags for just such occasions!

Swag
Swag

At 7.30am Dan returned after a good nights sleep and we got ourselves a cup of tea and headed to the meeting room to talk to Nicky about BMT & sign the consent forms. Catey arrived to put the mic on me as they were going to film us and off we went. The consent ran through protocol, side effects and long term side effects. Nicky was up front but reassuring and we left there ready for breakfast and happy to be another day closer to going home! Herb was looked after by a student nurse and on our return we found her sitting on the floor surrounded by a sea of Moshi Monsters!
The morning passed quite uneventfully. Lots of the usual meds plus some new ones. Bloods taken from the Hickman Line which is fab. Dan and Herb played the ipad and I nipped out in the poring rain to grab some food.
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On my return we started to assemble the photo wall. It’s looking great. Are you featured? If you want to send a pic through the post to us and you get a chance to laminate it first that would be fab.
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Rules in the BMT ward are different to anywhere we have stayed in Oxford’s Children’s Hospital. First plus is tea is allowed on the ward! Whoop whoop! Second plus is free wifi, 24hr TV and no rules about when Dan has to leave. Due to high risk of infection all patients are in their own room and visitors are restricted. Only 3 of us can be in Herbs room, myself, Dan and my mum. Food preparation for BMT patients is very strict so we can’t really eat in the room. Herbs food is prepared in the BMT kitchen. I had to fill out the food menus for the next 12 days!
Menu

We had a stream of health professionals in and out, nurses, care assistants, hospital school teacher, volunteer called Veronique who made a a door hanger with him. A finger prick for Amikacin levels, which went very badly!
Later in the afternoon the first chemo drug arrived, it went in pretty uneventfully. Herbie overheard the nurse explaining that it was toxic. He looked at us , raised his eyebrows and asked “why are you giving me something toxic?” Mmmm…that was one question I wasn’t expecting!
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Once done Herb had his food and before we knew it he asleep.
Asleep
Finally he went to sleep and gave me time to write this…

“He’s not missing much…he’s only in Foundation”

Some things make me so angry that I really feel my head may explode. I think one of the most annoying comments during this recent bout of illness for Herbie is the one regarding his education. In September 2013 Herbie started Primary School. He was so excited, his new class opened a whole world of opportunity. He asked daily when he would get his first reading book, told me in detail each lesson in maths, phonics and made us proud with his eagerness to learn. He had seen his big sisters and brother attend this school, he knew the drill, he wanted in! His puffed out chest and smiling face as he first put on his uniform is forever imprinted on my memory. He is a social butterfly, when I ask every day at 3pm “who did you play with today?” He replies “everyone, I like everyone, they are all my friends”. He tells me about the Christmas play, his dream to be a sheep in it (?) and sings the songs he’s started learning. He brings amazing junk models home and pretty much hogs the Monsters Inc Sully costume on a daily basis.
By his first parent’s evening in November he is off school ill, he has had a temperature for 2 days. “He’s made a great start” his teacher tells me “he’s such a comedian too”. He is, Herbie loves nothing more than ‘having a giggle and making people laugh’. We often discuss his perfect comic timing! I tell her, he’ll be back soon. Couple of days off at the most.

Herbie hasn’t been back to school since November 15th 2013.

Apparently many people believe this isn’t an issue…it is. Maybe they forget that I myself am a Foundation Stage teacher. I know exactly what he is missing and I know he wants to be back at school. During his hospital visits he attends hospital school when he can. He cooks, makes an amazing lantern, practises his phonics, his numbers and plays drums and other instruments. It’s a wonderful resource, he loves Juliet his teacher. During two weeks in lock down in a room in Bellhouse Drayson Ward in the Oxford Children’s hospital, Juliet brings school to him. We both look forward to this hour of respite , for me I can leave the room and drink tea! For him he can capture a moment or two of normality. One morning when the doctors come round they comment on how down he seems, he won’t speak or get up off of the bed. Finally he whispers to me why he is so down. His answer is not what I expect. He doesn’t ask to go home, to leave the confines of the room or even to have a break from the endless oral and iv medication. He simply says “why didn’t the teacher come, I wanted her to”

Juliet is brilliant, she tells me that he is entitled to outreach teaching and offers to liaise with everyone and sort it out. Today, March 3rd, Herbie had his first session with his outreach teacher, Victoria. He greets her dressed as a fox. He runs eagerly to see what she has in store and for just over an hour, as I potter around the house , they laugh, giggle and learn together. My heart sings! “When will she come again?” he asks just ten minutes after she has gone. “I want her to come every day.”

School

So the answer is “yes he is missing vital things when he can’t go to school” , he’s missed his first Christmas production, his first Christmas Fayre, First world book day and most of all he is missing out on learning and the social world of school that he loves so much. If they had witnessed his tears last Friday after he was reunited with his buddies in the playground when he asked me “can I go back to school now?” And I said “not yet” ,perhaps they would not say “it’s ok, he’s not missing much” …

Fox