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

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!

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!

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

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!

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.

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!

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!


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.

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

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

100 days and beyond

Today is T+105

It’s been a week since I last updated. About an hour after the last blog was posted we were informed by the doctor that Herbie could go home after 24 hours observation without TAZ. This went down like a lead balloon with Herbie. Dr Ed, who was given the unpleasant task of passing on the information, knew what the reaction would be and asked me to go to the nurses station to talk to him out of Herbie’s earshot. Whilst we were chatting Herbie appeared by my side shouting “I’m going home you know , I’m not staying here!”
It took a long time to calm him down but he eventually he realised, one more sleep and he could go home.
That night I asked our nurse , Amy , if she could get our blood results completed in our shared care folder ready to go home in the morning. Later the doctor arrived with the folder, she wanted to ‘give me the heads up about the bloods.” It all sounded a little ominous.
This is what she was worrying about…
On arrival Herbie’s bloods were as follows
HB 11.8
WBC 4.67
Neutrophils 3.56
Lymphocytes 0.42
Platelets 81

Over the last few weeks he has had a lot of TAZ and this can drop his counts which we have seen. So after another 50+ hours of TAZ it wasn’t a surprise to see they had dropped again but it was a worry.

HB 10.5
WCC 1.73
Neutrophils 0.95
Lymphocytes 0.29
Platelets 72

The dr said that GOS and Prof Pollard were aware but happy for us to still go in the morning. I won’t lie to you, I was shocked to see how low everything was. It was not unlike the days in GOS in the early days after transplant. I hadn’t expected to see numbers that low again.
We agreed that another blood sample be sent in the morning before we left to see if the trend was continuing downwards.

T+99 we were ready to go home rather early! Herbie was dressed and packed up at 7am. The blood results came in and they were not what I had hoped.
HB 9.9
WCC 1.38
Neutrophils 0.61
Lymphocytes 0.29
Platelets 69

The neutrophils were now well under 1 and close to needing GCSF, something we hadn’t needed since early June. We returned home wondering how this would all pan out and hoping that by Tuesday, when the next bloods were due the trend would reverse.

Herbie settled back at home and Dan and I wondered how long we would get this time.
Things have settled down this past week and the bloods picked right back up on Tuesday as follows…
HB 11.5
WBC 4.74
Neutrophils 3.56
Lymphocytes 0.47
Platelets 81

Herbie still has a 1600ml fluid target but thankfully since returning home we have not needed water boluses over night and the pump has stayed well and truly in the cupboard (which is just where we like it! )
We have almost weaned the steroid and the MMF now so things are moving forward and despite how completely mad this roller coaster ride seems to us GOS say that are extremely pleased with his progress post BMT!

One day this week we were concerned that Herbie’s temperature might be rising again but his body seemed to control it going from 37.6 back down to 36.8 without the need for calpol or a call to the BMT on all reg.
He’s been bouncy and happy and just a little stir crazy, can’t wait to get him out and about!

So as the new school term approaches I greet it with mixed emotions. My first born Lily, so seriously ill last summer, starts secondary school with her twin sister. She is happy, healthy and a completely different girl to the one who suffered so much last year. Last year she returned to Year 6 with a cushingoid face, tiny frame, almost unrecognisable from who she is today. For that I am so so grateful.
This time last year I was starting to get excited about my new class, home visiting etc. They were a fabulous class, with so much promise. I hoped to be in school all year, unlike the year before, and was confident about that.
Herbie was starting school
He was an excited 4 year old boy who couldn’t wait to join his siblings at the local primary school. November the 15th 2013 was the last real day he attended. He’s done a few sessions since but literally a handful. He won’t return to school to rejoin his class mates in September and my class of 2013-14 have moved on to the next teacher and my new class will remain names on a list until Herbie is well enough for me to return. That makes both of us sad. However Herbie will get to see his lovely outreach teacher again which makes us happy!

I have so much hope for the future though, things are going in the right direction, we will keep going.
I received a lovely gift from a friend’s mum this week…couldn’t have been more apt…thank you

HOM HOM HOM

T+55

I didn’t sleep well last night. My mind was a whirring mess and I was worried that I wouldn’t be awake, showered and dressed by 7.30am to meet the nurse, Shanice, to prep Herb’s meds. I ended up being ready at 7am! The problem was that Herbie wasn’t interested in waking!

When Herbie finally woke he wanted to have a bath and get breakfast underway.
Amy came in to spend time with him. He really loves Amy!

Amy, the play worker on Robin & Herbie

We decided to take lots of photos of the staff as you never know if we might get discharged before their next shift. Sufi wasn’t our nurse but she asked if she could pop in and see Herbie to sing their favourite duet… The eat eat eat song.

Sufi and Herbie

She was so sweet saying that when he’s discharged she will miss him so much. Amy said the same adding “what will I do without you Herb?”

Dan arrived and Rehka took us to recap our line safety talk and finish discussing the food lists for discharge. Herbie had Jess in from hospital school doing experiments!

Herbie asked lots of nurses for photos

Sandra says goodbye to Herb

Sandra obliged but Herbie and Lucinda had a scrap!

I left to head back to the shire and Dan stayed.
The bloods were a little confusing…

HB 105
WCC 13.20
Neutrophils 10.41
Lymphocytes 1.56
Platelets 163

CRP 33 ( ????)

The obs were all good with no signs of infection. The CRP will be repeated in the morning.
We just have everything crossed that it’s just a blip.
Ciclosporin levels came back high! After a week of trying to get it up higher to stop the GVHD. The dose had to be reduced.

The boys settled down to an early night in Robin Ward and I find myself , once again, with an over active mind.
I need some meditation!

HOM HOM HOM HOM

HO HO HO …it’s drawing nearer

T+54

I want to start the blog by talking about community tonight.
This whole transplant journey to date has shown me that community spirit is still very much alive out there. So many things over the last few months that I have written about here in the blog that have really amazed me. North Leigh School super hero day…what a thoughtful gesture to celebrate my brave boys whilst the children have fun and learn and raise money for GOSH. The school really have supported our family so well prior to and during BMT. They have looked after Lily, Kitty & Rufus, valuing them and supporting them and ensured Herbie has always felt part of the school despite not properly attending since November 2013! The Skype sessions with his class, the post and books sent, gifts from teachers and teaching assistants. The community spirit extends beyond the school, fellow Nor Lye residents donating money to the Dream Team from prize money for winning races to best scarecrow. The net goes wider… To my school community. Witney Community Primary staff have supported me through this, making it easier for me to dedicate my time to my family but giving me the space to return, the parents have sent messages of support and gifts to Great Ormond Street, one even plans a Super hero day at her nursery to raise money for GOSH. BUT the net goes wider still…
This morning I receive a text from Herbie’s wonderful outreach teacher telling me that she was at Blake School in Witney watching the Y6 class do their end of year play. They chose 3 charities , one being GOSH , to raise money for and named Herbie as their reason for the choice! Then I receive a message from a friend and fellow FS teacher at the same school saying they also want to do a superhero day next week too , all proceeds to GOSH! I’m overwhelmed by everyone’s thoughtfulness and support.

I headed back to London this morning, arriving in time to go through the discharge talk with Rehka and Dan. Quite a lot to take on board there! Then there was the meds to prepare and administer.
Herbie was thrilled to see Rehka.

Rehka and Herbie

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

Thank you Harry!

Thanks Donna and Richard.

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!

News from Floss!

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

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

Where’s the corner?

T+45

I was woken by the sound of my phone announcing a text from Dan this morning at 6.15. It was with hesitation that I read it…what was he messaging so early to tell me? It could be good news, the rash was better, things were improving? Or maybe that things were worse? I decided I had to just face it so I opened it. It was thankfully not about Herbie himself, it was about alarms on pumps going of and Dan bit being able to sleep despite being exhausted due to the noise.

Kitty had woken with a high temperature in the night and continued to have one this morning so I quickly sorted out her staying home and as soon as the other two were safely dropped to school I headed back to Great Ormond Street. The journey was an easy one in terms of traffic and I made excellent time but all the way there I was plagued by thoughts of how Herbie would be today and worries about how long this whole episode would take to resolve.

I called Dan as I arrived in Judd Street as usual and he gave nothing away in his voice but when he said Herbie was with Helen the teacher I knew he couldn’t be as bad as I had anticipated. Dan and I met in the Lagoon and he filled me in telling me that they had slept in after the initial early start, dreaded NPA and finger prick. On waking they had a bath, and applied the stronger cream to the rash that was a little itchy. Dan felt it was improving though although he told me to brace myself as still looks pretty awful.

I’m glad he warned me as it would have been a bit of a shock! He really was very rashy. Helen left saying that as of tomorrow Herbie would have a new teacher, Jess, as she had an ex pupil back who was demanding he had her. Herbie will be sad to say goodbye to her I’m sure. He was on great form and I was so happy to see him behaving normally despite the rash.

We didn’t get out today but thankfully he didn’t notice. He had a lovely FaceTime with Lily and Sam when they finished school. It really does lift his spirits and they are the only two he will happily FaceTime as he moans usually that people are interrupting his games/programmes!

Facetiming whilst nurse Sufi does meds

He had a lovely book from Cherry Class in his school, full of Superhero stories that they had written and illustrated. The most exciting thing was the new superhero outfit that they sent for Dog dog! Herbie was thrilled (and I did notice Dog Dog looking a bit smug too behind the mask!)

Super Dog Dog to the rescue

There was also some fab Moshi clay buddies and Moshi squishys that were sent by Jo and the gang.

We were a little miffed to learn that the doctor had been whilst the teacher was in with Herbie so we had missed her as we had questions! Especially when the blood results came in!

HB 92 (brilliant, almost back in normal range without transfusions)
WCC 12.49
Neutrophils 10.39
Lymphocytes 0.75
Platelets 136! ( go platelet making boy)
CRP 13 (yeehah )

Urea 5.8
Creatinine 29

The neutrophils are still rising as we were told they would with this extra steroid but I was concerned that the lymphocytes that they are trying to harness are also going up. Apparently the doctor was happy with the bloods.

Dan was thinking about heading back when Herbie’s skin started looking redder and he became very upset and agitated and said he was itchy all over. Piriton was given but there was no change, the stronger cream soothed it temporarily but soon he was violently scratching again. It was all a bit upsetting. Finally just after Dan left the hospital Herb was given the stronger Piritonesque iv that also aids sleep.
He fell asleep, but on my bed but the rash continued to look fiery and he was itching in his sleep.
He didn’t sleep for long, waking upset and itchy and demanding a dressing change. Ella, his nurse again tonight, obliged but couldn’t give anything more for the itching.
Finally he calmed down and I watched lots of the redness fade. He started running around the room! He ate a packet of crisps and then iced gems and drank another 280ml of drink! (Fluid target exceeded then! ) finally he sang along, whilst wearing headphones, to Moshi songs and was happy as anything!

He’s still sitting here as I type, with trusty Dog Dog (The Dog wonder) by his side.

Ella was saying how Herbie sailed through the first 6 weeks making transplant look quite easy. How they all expected him to be gone a few weeks back and then this little blip has gone on, just need to turn the corner and it’s home.
I’m still waiting to find that corner so that I can turn it! Maybe tomorrow, keep plodding onwards…

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

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

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

Thank you Maureen & David

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

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”

Gay sent a lovely letter and Moshi cards for Herbie.

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!

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

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.

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

Superhero bunting courtesy of Cathryn at http://www.cj-art.co.uk

There was also a package labelled as below

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?

The last package contained lots of lovely picture from his class back home in North Leigh. It really made him smile.

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!

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

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, 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.

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

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.”

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

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!

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

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.

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

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).

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

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

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

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

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.

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.


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!

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!

Once done Herb had his food and before we knew it he asleep.

Finally he went to sleep and gave me time to write this…