Category Archives: teacher

Looking good, feeling fine…

T+20, are we really only a day away from 3 weeks post transplant? It’s amazing that it’s gone so fast really. The day started with a rather sleepy & grumpy boy and I was worried that we were in for one of our ‘not so good days’. He climbed into bed with me and seemed tired.

I went for my shower and he grumbled that he wanted his bath and he wanted it first etc, etc. I managed to get him to agree to the normal routine. After his bath I tried to remove the plug, it had come away from the chain over a week ago and had been fine but today I just couldn’t remove it! It was well and truly wedged in! I vowed to spend the day trying to shift it.

We decided to carry on with the Hama beads for a bit and then the post arrived. Much excitement at the three packages left in the ante room by nurse Lucinda!
First up was a package that Herbie already knew was from Lily & Sam based on the printed label! He was suddenly much brighter. Lovely pictures from the terrific two, a Costa moment for Dan & I and the most amazing bunting from their talented mum, Cathryn. If you don’t know her work please visit her website.
http://www.cj-art.co.uk
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Superhero bunting courtesy of Cathryn at www.cj-art.co.uk
Superhero bunting courtesy of Cathryn at http://www.cj-art.co.uk

There was also a package labelled as below
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containing Adventure Time badges, he was thrilled and added them to a hat! Trouble is the sender didn’t let us know who they were?
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The last package contained lots of lovely picture from his class back home in North Leigh. It really made him smile.
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I can not express enough the impact that daily post has on his well being and mood! From postcard to parcel, it’s all so very much appreciated and I am certain has helped him deal with the last four weeks away from home. Thank you x
Helen arrived and he seemed reluctant for me to go. I had to promise to stay in the parent room on the ward, which I dutifully did (after all he can see me leave the ward from his room!)
I chatted to another BMT mum, her son is about two weeks ahead of us. They are also being featured in the GOS series. It was nice to chat. I returned in time for Helen’s departure and the arrival of lunch!

Herbie is still managing to eat and drink quite well. After chatting to other BMT mums this week I have realised that he is doing very well as he has so far avoided TPN (total parental nutrition) which is given 24 hours through the Hickman Line meaning you are always hooked to iv. One child is clinically well enough to go home post transplant but won’t eat or drink so has to stay in hospital!

GOSH has lots of volunteer helpers who come and sit with the children whilst parents take a break from the confines of the room/hospital. It’s quite nice for Herbie to meet different people. Today a new (to us) volunteer came and offered to play for an hour. I was instructed again by Small that I was under no circumstances allowed out of the ward…the Costa card will have to wait until tomorrow when Dan arrives.

I returned an hour later to find him deep in conversation with the volunteer, an ex hospital school teacher apparently, about his photos and favourite Moshi etc. He was happy and content.

When she said goodbye we set our minds to finishing the Hama bead Minnie Mouse. It was a good joint effort, now we have the arduous task of keeping it in one piece until tomorrow when Amy the play specialist can take it off and iron it!
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Blood results were in and showing that he needed both platelets and blood as his levels were low.
HB 79
WCC 2.19
Neutrophils 1.52
Lymphocytes 0.13
Platelets 0.22

Neutrophils had dropped considerably but this was expected after the GC-SF boost two days ago.they are still 1.52 which is higher than they were on 31st May after the last GC-SF Which I would hope would mean the levels are rising!

A work man finally had to be called as no matter what we did the plug wouldn’t come out of the bath. The guy arrived and Herbie said “it’s stuck, you won’t get it out” to which he replied “ahh but I have a secret weapon” whilst holding up a plunger! Herbie pulled a face and said “well it’s not so secret now you’ve shown us!” Thankfully, secret or not the plunger worked and the bath water finally drained 7 hours after the bath was over!

The doctors came to do ward round whilst I was in the parent room and told our nurse today, Maxine, that all was very good so no need to disturb me! Another drug converted to oral today, MMF , which runs over 2 hours three times a day so that frees up a few hours in the day. It is also one of the last drugs of the day usually finishing at 1am so that will be a pleasure to lose! The nurses seem amazed that he is dropping iv’s already and so are we!

Herbie had a great day, drinking just shy of his litre target and eating well too. He really does like the food here. Sadly just before bedtime things went a bit crazy. The milk feeds have left him with a rather upset tummy and now a sore bottom which was so sore at about 7.30pm that he was literally writhing and screaming the place down. It was awful. Maxine sent in some cream but it seemed to sting and he screamed more even though the skin doesn’t appear to be broken. Oramorph was given next and this started working and he calmed down after 30 minutes. Finally I managed to get him to sleep at 10pm.
Platelets have just finished infusing as I type, as has his ambisome iv. We were waiting on the blood to arrive to infuse over the next 3 hours but a mix up with the order means it will be in the morning now.
Hopefully tomorrow he will wake with a smile!
Dan arrives tomorrow afternoon and I will head back for another weekend in The Shire.

Day 21…please be good to us all xxxx

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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