Tag Archives: Hickman line

Rockets, sparklers and miles of smiles…

T+176

Since we first heard that Herbie was definitely having a Bone Marrow Transplant earlier this year we have worked very hard to stay positive and focused, not just for our own sanity but for Herbie and our other children.  I can’t tell you how often we have been commended by friends, family, nurses, consultants and total strangers for our positive outlook and our strength.  It’s always very lovely & flattering to hear this but I often think ‘what is the alternative?’ And ‘wouldn’t any parent do the same?’

So here we are , 175 days since Rufus donated his cells. It’s often hard to remember our time in Great Ormond Street in much detail,  perhaps we are already pushing it back to allow new and happier memories.  Some days  actual transplant time seems miles away then suddenly something transports you back there in a second.  That was the case this week.

On Wednesday we went back to GOS for Herbie’s outpatient appointment & Lily came too as Waseem wanted to see her as it had been almost a year since her last appointment. Herbie was thrilled that his big sister was coming.  The mood in the car was happy and positive. We talked about the imminent future, Christmas, birthdays etc with a different , more hopeful tone.  I won’t deny that last Christmas was pretty rubbish despite my efforts to keep the spirit alive,  even me, the Christmas queen, lost the Christmas sparkle. The birthday celebrations got cancelled, the family get togethers only saw some of us and this year we have plans to turn what Herbie & I refer to as last years Hard Candy Christmas (there’s some Dolly Parton for everyone right?’) into something a little more soft and squidgy!

We arrived early and walked from our usual parking space , past Russell Square tube station down  to the hustle and bustle of GOS.

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We were met by Hiral and Charlie,  from the BBC crew,  who wanted more footage , especially of Lily,  for the series. Once we arrived in Safari it was the usual drill. Herbie was called in for  weight, height etc whilst Lily went off to film with Hiral & Dan. His BP was rather high but he was so excitable that Waseem wasn’t overly concerned.

As I had been checking in I felt a hand on my arm and it was Vicki, Jack’s mum , who we seem to bump into every appointment now. Looking at the gorgeous Jack it’s hard to believe that I started reading their blog almost a year ago  and  what has happened to us all in that time. It’s funny how people you hardly know seem like old friends, bone marrow transplants do give you a bond with those you share the journey with.

We went into see Waseem.  He looked genuinely pleased to see Lily & Herbie looking so well. It was agreed that Herbie would restart the wean of MMF that was stopped months ago and if that went to plan in two weeks we would drop the steroid (prednisolone ) by another 2ml per dose. The steroid creams were to be used every other day  & in December we would repeat scans etc  and hopefully stop the Micafungin iv. We were more than happy with that plan. Herbie asked again about returning to school and Waseem said he thought he could do a few hours here and there , hopefully be in the Nativity, with a view to proper reintegration in the new year.

Lily  looked well and he was pleased that there had been improvement in her  lung function. He said that for now the BMT was on hold. Music to our ears!  He was very pleased to hear that she did PE had managed no days sick from school, was off on an adventure weekend and had  played a gig on Saturday!

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Both children needed blood taken, for Herbie this is easy using his Hickman but Lily had peripheral bloods taken using a little numbing spray.  Hiral and Charlie were filming  this with a new member of the crew!

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Before we left for home Herbie and I had another job to do.   We returned to Level 5 to Robin and a Fox Wards with cards and magazines for two BMT buddies.

Our BMT buddy Milan,  who  came into transplant about 2 weeks before we did in April this year, is still in his same room in Fox and has been now for nearly 7 months.  I’m sure you will read this and be touched by the thought of this, a young boy, the same age as  Ru, being stuck in isolation and unable to go home post transplant. I can assure you that once you have been in their for ten weeks you feel nothing but admiration and love for these people. His wonderful parents, juggling work, hospital and another child whilst maintaining  positive outlooks and  determination.  We know how tough that is for ten weeks let alone 7 months.  It was great to hug his mum and catch up, although we couldn’t obviously go to see Milan himself. I just wanted his family to know that we think of them.

Just to prove how special they are, they gave Herbie a gift too! Still thinking of others!  Herbie was thrilled when we got to Robin to see Rehka through the window, he shouted at her and suddenly she burst through the door to see him, closely followed by Ella, another of his favourites. It was wonderful to catch up with them and we all had hugs.

Yay! Catching up with  Rehka & Ella
Yay! Catching up with Rehka & Ella

Herbie gave them the card and magazine for Jacob who had his transplant in May like Herbie but has recently returned to GOS following a bout of illness.  We didn’t want to disturb him or his mum as we know things are a bit tough right now but I was thrilled to bump into Lucy, his mum , on the way to the lifts and catch up. Another strong family, juggling work, two other children and being away from home.

Finally, after goodbyes , promises to return to say hi again soon and messages of  support,  we left. Herbie was thrilled with his gift but I knew we were both thrilled about having the luxury of leaving to go home…being back there brought it all back.

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We travelled home and got back in time to run indoors for coats etc for Guy Fawkes /Bonfire night celebrations. I quickly opened the post and was emotional to find this letter confirming guest entry for us all to Camp Bestival 2015!

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Then it was off to Dans parents house for the family fireworks and. Herbie’s first family get together since March. He was thrilled and so were his cousins and friends.

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So after a fun packed day we move forward into the next phase of recovery. Weaning off of more meds,  gradually visiting school and hopefully an immune system that works properly.

our thoughts are still with our BMT friends, Milan, Jacob, Jack  and Erin and their families who are having tougher times.

It just shows how fragile each stage of this process is…

 

Bloods…

HB 15

WCC 9.12

Platelets 166

Neutrophils 8.30

lymphocytes 0.18

 

Oh and if you are feeling a little bah humbug about people getting festive a little early think again, they may have reasons for it that you have no idea about.  Everyone deserves to decide when they want to start feeling Christmassy whether it’s November 1st or Dec 24th. X

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Dangling a carrot

T+83

It’s incredibly hard being in hospital when Herbie appears so well! He’s bouncy, reasonably happy (apart from the being in hospital bit!) and drinking well and eating too (although GOSH BMT kitchen food is streaks ahead of the JR).

Dan spent most of the day with Herbie in Room 5 on Bellhouse Drayson. Not much happened apart from the clown arrived to make a balloon sword and a balloon motorbike (apparently!)
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When I arrived  he was thrilled that I was clutching his copy of Rio 2 and that joined his viewing list!

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It was a slow day news wise. He managed the whole day without a fever. It seemed obvious to me that the TAZ had been stopped too early previously. I was chatting to Dan about it and saying maybe it wasn’t viral after all when Professor Pollard and Dr. Truck from the ID team arrived. Prof Pollard then said exactly what I had said to Dan! He said he felt whatever it was was bacterial and TAZ sensitive so he wanted to make sure he got enough BUT he wanted to get us home, he hoped if we were willing to learn to administer the TAZ that it would be tomorrow. Yippee! He said it could be something in the chest or sinuses, an x ray tomorrow could rule out the chest.

However the excitement was soon dampened, the dangling carrot seemed a little farther away after a chat with our nurse who said learning to give the iv needed a specialist teacher and time, she felt home tomorrow was unrealistic. (As I had also suspected!)

When I was coming back up the stairs to the ward after visiting the shop I bumped into Dr Kelly, another of my favourite doctors and one that has been through most of this journey with us. He is such a kind and gentle doctor and I always feel so at ease talking to him. We chatted about Herbie, transplant, Lily etc. I do feel lucky that we have such a great local team.

Herbie had his Hickman Line dressing changed on his request and then settled down to a few dvd’s.

View from our bedroom window
View from our bedroom window

I spent the evening watching Netflix (the TV goes off just before 8pm here so the ipad, Netflix, iplayer etc are essential!)

Can’t believe that yesterday was my 100th post on the blog! I guess I need to end this one with another interesting fact, you will like this I think…

Blood has a gender: a quick school biology refresher: In humans, whether a person is male or female is determined by their two sex chromosomes. Females have two X chromosomes and males have an X chromosome and a Y chromosome. Gender is present in the immune system and blood-forming cells, so if a male has blood from a female their blood is now female.

Apparently a female patient with a male donor has a lower risk of graft-vs.-host disease than other gender combinations. A male patient with a female donor, in contrast, is more likely to get GVHD because the transplanted female cells can recognize the male recipient’s tissues carrying a Y chromosome as foreign and attack the tissues.

Herbie had an optimal transplant of same gender, family donor and same blood group! His blood stayed male but I know that most of the other transplanted children I met had the opposite to themselves. So interesting!

Just can’t keep away!

T+78

Today I woke thinking how lovely it was to all be home again. Nowhere to rush to and nothing much to do. Heavenly!

I should know by now, things don’t go the way we planned that often.

The  pump had worked a treat and Herbie had taken another 1000mls of fluid over night. He came down saying he wasn’t hungry or thirsty. First alarm bell rang!

After an hour of playing his ipad he said he felt hot and tired. As we left yesterday we were told to keep a close eye on his temperature. They had changed an antibiotic and although confident it was fine a temperature could be a sign that it wasn’t. Herbie asked to go back to bed.  We have  heard lots of other BMT patients talk about how tired they get post BMT but Herbie has never been like that.  However he had gone to bed very late two nights in a row so I let him go back to bed and decided to do his temperature.

Using a digital ear thermometer  he recorded 37.4 and then 37.5.  He felt warm so I used a tempadot that I had from GOSH…38.2! I was confused!

I took the temperature again 30 mins later.  37.5 by digital ear thermometer, 38.0 under arm using a tempadot.

Our community nurse Sarah arrived and agreed it was strange and he did look lethargic and he hadn’t eaten or had anything to drink. An other 30 mins later, so an hour after the first temperature I took both again. 37.2 by ear, 38.0 under arm.  As per GOSH protocol Sarah called the Reg at the JR who agreed it would be sensible to review him on Bellhouse Drayson as soon as his iv’s were done. As the iv’s started he became much more lively, chatty and generally normal looking again.  I took his temperature once more, using both methods. 36.6 by ear,  37.4 by tempadot … Very odd but still we needed it checked.

A rather jolly Herbster headed off with us to the JR to see the doctor on Bellhouse Drayson,  Victoria.  We went into room 24, next door to the room we left yesterday and actually the one Lily had for weeks after she left GOSH last June.  A familiar face,  Rebecca , met us at the desk and asked how things were and then Dr Victoria came in and checked him over. She decided blood from the line, from both lumens, was to be taken and sent for culture and a urine sample needed doing too. Everything seemed fine otherwise.

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Another familiar nurse, Maz, was looking after us. She said the nurses were fighting over who would look after him and she had won! She took the blood and also did obs, temperature 36.2!  SATS & heart rate fine. Urine was clear and finally after 3 hours we were sent home with strict instructions from Professor Pollard to stick with the digital thermometer.  Maz hep locked his Hickman line and then said goodbye. Once again we headed home.

 

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Once home normal serviced resumed!

Sadly the impromptu visit meant we missed Shannon cutting her long locks off to give to children to make wigs for those in need.  What a courageous and selfless act. Well done Shannon, hope you raised loads.

Here’s to a peaceful few days…

Simple Saturday pleasures

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

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

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

The morning was spent on a couple of loom bands, Herbie helped, and then just various chatter and TV.
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We talked about home and friends, he told me the things he wants to do when he gets home and we reminisced about last years holidays to St Ives and Dorset and camping trips with The Abbotts.

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

We decided to head out a little earlier this evening as it was cool but dry. We went to Queens Square as we have the last few nights but then I suggested Russell Square where Dan and I had sat outside the cafe in the sun only weeks before. Herbie loved this idea. It was a much longer walk than he was used to but he did brilliantly. I did have a sudden panic when I realised that I had forgotten to take a urine pot with me incase he needed a wee but thankfully we were ok. When he saw the fountain through the railings he ran off in its direction. He was so excited!
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He was absolutely fascinated by the fountain and I was able to sit on one of the surrounding benches whilst he ran around it, whooping with delight and joy. My heart soared!
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He came to sit with me for a bit and we chatted again. He took of his hat. The new hair growth now very much in evidence.
“Did I still love him without hair?” The question broke the hazy idyllic moment with a razor sharp edge. “Of course, of course I still love you, long hair, short hair, no hair…makes no difference to how much I love you.” “But you always say you love boys with long hair?” “Yeah but I love Daddy and his isn’t long at all!”
I noticed a man who was reading his paper on the next bench look up and smile. Herbie ran back to the fountain.
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As we walked back to the hospital I suddenly became aware of the responses of those around me, smiling at Herbie as we walked by, children staring at him and whispering to their parents, even strangers just saying hello as we left the park. I looked at my boy, he had removed his hat, the little Rice Krispie head was on show! That’s what it was all about. He walked confidently back, his peg hanging out from his hoodie, Hickman line swinging in a Baggie round his neck.we went back to Robin Ward via the vending machine to get his treat. This little ritual is one he loves now. He saves it until Skatoony starts at 9pm.

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

Time to rest my head x
Night all.
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Boring, boring, boring

T+37

For the last few days Herbie has been over using the word boring. Nurses are branded “boring”, the doctors are definitely “boring”, the day is “boring”.

Dan reported that this trend was still continuing this morning. Breakfast cereals have been “boring” for a few days now with crisps being the preferred choice!
Dan told me that Herbie was warm on waking and breathing rate was up a bit too. All signs of an impending temperature! Ugh! However when the nurse, Ella, did his obs he was 36.5 so fine.

He needed another dressing change as the one done a couple of days ago was coming off.
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Herbie always like to be involved and help with peeling off the old dressing.

The doctor came in to see them and apparently, Dan was totally unaware, but Herbie had spiked, almost 74 hours since the last time. We were both gutted! The doctor said it was probably engraftment fevers (also known as good fevers) but she would chat with the big boss and get back to us.

This news was just so annoying, fevers were gone, things all looking very positive and despite not actually saying it myself, talk of the H word. All on hold AGAIN no doubt.
The coverage was changed again so he is now on iv Meropenum , micafungin , ciprofloxacin and vancomycin…back where we started. That said at least lungs etc have all been checked and are not the cause. The line didn’t want to bleed back today and this happened last time the fevers hit, that time it was a line infection.

This was all going on but the boys still enjoyed some puzzles, games and a little Thomas The Tank Engine.
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Bloods came in and reflected what was going on…

HB 88
WCC 5.20
Neutrophils 3.92
Lymphocytes 0.21
Platelets 64
CRP 155 (back up by 46!)

Urea 2.5
Creatinine 36

Kidney function just proves how quickly things can turn around though.

He continued to be a little warm and when one of his fave nurses Rehka came on shift for the evening he was already in bed feeling warm. More iv paracetamol and two weary parents, one who had been at the coal face dealing with Herbie, the other at home coping with one of the most hectic weekends in a while.

I think Dan and I are starting to see Herb’s point…

BORING being in hospital
BORING fevers
BORING waiting to be discharged
BORING feeling stressed

BORING, BORING , BORING,

No pity parties but can we all go to that place in Nor Lye beginning with H now please? (Oh and for the record…Fevers…you are SO boring and last season!)

Don’t mention the ‘H’ word!

T+31
I woke and found a rather warm boy next to me! I knew, long before I knew officially , that he was temperature hot and gutted just isn’t a strong enough word for how I felt. I had gone to bed feeling so happy and positive and woken to this complete change!

He had a temperature of 38.2 and the student nurse said she would return in half an hour to retake which she did, 37.5 apparently! I was happy but not convinced as I noticed when the heart rate was taken that his was quite high which usually goes with a fever. When his nurse Maxine came in with meds I told her he still seemed hot. Temperature taken again , 38!
I knew it! No paracetamol given but bloods for cultures taken from the line and the doctor informed.

It was also the day for weekly tests, NPA and urine and stools!
Dan obviously not here and I knew the NPA would be tricky. Maxine came in when he was in the bath and then by the time she was back she had 3 minutes to meet the lab deadline. I grabbed Herbie, she grabbed the tube, he thrashed and screamed I held him tighter and thankfully Maxine got it done quickly!

The morning passed quickly and Herbie seemed to perk up and subsequent temperature checks were all 37.5 or less. Helen arrived and so did Dan so after a quick cuddle we stepped out to leave him to his school session and went to Costa for lunch (& breakfast for me!) and caught up. On our return we met the Doctor at the desk who said although he seemed pretty good, he had spiked a temperature and he said he felt a bit sick so she had started antibiotics although it could be one of the many viruses doing the rounds.

We went in and he seemed a bit miserable but he wasn’t hot. His tummy hurt he said but it seemed to just be he needed a wee! We were struggling with fluid intake as Herbie just didn’t fancy drinking so that by 1.30pm he had only had 450ml of his 2.2 litres! Gifts from home were much appreciated, thank you Auntie Lucy and Aunty Cathy and the cousins xxxx Angela sent a fab hat for future England matches and a gorgeous personalised cushion for me SF
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Thanks everyone.

I went to get the blood results with Rosie, the ward sister.

HB 110 ( only 5 away from a normal range but obviously he had a transfusion)
WCC 6.09 (in normal range!)
Neutrophils 6.09!
Lymphocytes 0.24 (down on yesterday )
Platelets 76

Urea 5 (in normal range at last)
Creatinine 68 (still looking much better)

I was so excited about the neutrophils until Rosie pointed out that they will make more to fight infection and it was a big jump from yesterday. I said but surely even the fact they can make more when needed and mount that attack is good? She agreed it was and then said “you are in yellow precautions now, probably have been for a few days!
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Whoop whoop, we are able to ditch our aprons (although the hospital staff still have to wear them on entering the room) but more importantly Lily, Kitty & Rufus can visit. This is very exciting although we probably won’t bring them here yet as the whole slapped cheek thing is too worrying. Bittersweet as always!

Rosie, the wonderful ward sister, was covering for Maxine whilst she was at Uni for a couple of hours. She came to administer an iv but found both lumens on his Hickman line blocked. She managed to get them going again thankfully & let Herbie give his medicines via the PEG which he loved. Especially his blood red rifampicin!

Administering his own meds via his PEG.
Administering his own meds via his PEG.

She also said to me when I commented on how annoying it was that every time our discharge was mentioned something cropped up “I always say never mention the H word as this always seems to happen”

He seemed so much happier during the day and stayed lovely and cool and was eating and drinking again. Maxine was joking with him about Rekha being on the night shift and he was giggling and loving the whole thing. He watched a little football with Dan and they looked up Brazil in the lovely map book he was given a few weeks ago.

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Around 7.30 he was looking good so it was a surprise that at 8.30 when we went to weigh him before bed he said he was chilly. I was worried as he always complains he is cold as his temperature rises quickly. We weighed him but the weighing chair was out of battery so I had to pop out and swap it. When I returned he was snuggled in bed and it was a struggle to get him to move!
He was shivery as he sat in the scales. He weighed 22kg, he had started the day at 22.05kg. He was however nearly 600mls down on his fluid intake.

He climbed back into bed as Dan hugged him and said ‘see you Friday’ we said goodbye and by the time I returned to the room with my cup of tea I knew, despite him being asleep, that he was hot. Rekha arrived with his meds and was disappointed to find her sparring partner asleep. She took his temperature , it was an impressive 39.2. So she disappeared off to get iv paracetamol.

He responded very quickly to the paracetamol, when Rehka returned an hour later he was a cool and normal 36.2. Rekha remarked that this seemed like another engraft fever which eased my mind a little.

I am sitting here in the quietness of room 2 listening to a pump whirring as it pumps water slowly via the PEG into Herbie’s tummy to top up his fluid intake and to the crying baby next door in room 1, who has only recently had her cells in the bid to prevent a relapse of the ALL she suffered and the ever present hum of the filtered air conditioning .
I hope T+32 is a little better temperature wise for Herbie. Sleep tight everyone and remember…

DONT MENTION THE H WORD!

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!
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Thankfully he was lured away by his inquisitive nature!
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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).
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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.
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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.
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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.
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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!
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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.
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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?