He’s a champ!

T+75

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

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

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

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

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

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

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

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

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

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

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

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Another thing to celebrate is his hair growth! Very exciting! My long haired boy will be back before I know it! My little Rice Krispie really is becoming Baby Pineapple (Lily’s nickname for him) with his spiky top!
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This weekend sees a friend’s daughter shave her head for charity. It’s her 12th birthday and she is giving her hair as a gift to a wig making charity? Such a courageous thing to do. Drop by at the a Turner Hall in North Leigh this Saturday to be part of her big fundraising day. Shannon is pictured below with her lovely mum Sarah and our dear friend Leigh whose son and our ‘adoptive nephew’ Hugo also lost his hair during his battle with ALL (Leukaemia ). Thankfully he is now recovered and sporting a rather amazing head of curls!
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So I left Herbie with a dairylea dunker and no temperature, 100% SATS and the knowledge that he seemed to have turned a corner today, even the cystitis is greatly improved with just a trace of blood measuring in his wee now (and not an oestrogen patch to be seen yet!)
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It feels like we are winning. As nothing has grown yet he needs to complete the antibiotic course, this may make going home tricky but we will see.
The pump has arrived for the water at home, we just need our Small back!
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A change in direction

T+70-74

It will be obvious that I haven’t been blogging for a few days. Sadly it’s not due to having nothing to blog about but to do with access to internet.

Friday (T+70) came and Herbie was clearly suffering from a water infection or cystitis and it wasn’t fun for us at all. When our community nurse arrived we discussed it and we chatted to the BMT nurse at GOSH who said that they would send a prescription to the JR for a medicine to help but that the main thing to do was to drink the 3 litres! This was going to prove tricky as Herbie decided he would NOT drink the drinks we had at home.

Later on Friday afternoon the phone rang and it was GOSH again, a change of plan after discussion with the BMT doctors. They wanted Herbie in hospital to have iv fluids to flush the virus out ASAP. This meant going to our local, The John Radcliffe, and were to wait for a call from them with directions on which ward to go to once a cubicle/room was allocated.

For some reason the news came like a sledge hammer. Going back in to hospital seemed like such a backwards step, despite knowing this was always a possibility. 48 hours hydration, it shouldn’t be more than that was the info from GOSH but from experience I know that hospital stays never quite work out to the length you are advised.
I felt angry, we had managed two weeks…TWO WEEKS! It just seemed so unfair , although I knew it was medically the right thing to do.
I had to break the news to Herbie…he sobbed, yelled and ran to his room shouting “I’m not going …I’m not going. I just did 9 weeks! I hate Great Ormond Street and I hate the JR. My heart was breaking for him, I knew how I felt and it wasn’t me that got prodded and poked! I left him to calm down in his room and spotted Lily crying quietly in her room. This admission was going to affect us all.

We travelled in silence to the JR. Herbie slept and when he woke he was still not impressed. The all to familiar car park, lifts and wards of the children’s hospital brought back so many memories of previous stays. I kept telling myself it’s just 48 hours, he’s not actually unwell in himself. Let’s get through this blip.
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We were back on Tom’s Ward, where both Lily and Herbie had recovered from their lung biopsies, where Herbie had stayed for two of the three operations to remove the nasty lymph. We knew the ward, the staff and at least that helped. They remembered Herbie too. We had to go in our own room due to the immune system still being so new. Bloods were taken and Shelley Segal one of our favourite consultants arrived. She is the consultant who met Dan and Herbie from the ambulance back on Mother’s Day 2010, when we were losing him to meningitis. We always feel comforted when she arrives. She came with a new Foundation Doctor called Liam who was a bundle of energy and instantly took a liking to Herbie.
A plan was hatched, iv fluids were ordered and strict input/output monitoring began.
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The room was one of the larger ones but without a bathroom which meant a walk across the corridor. I felt anxious about it but reminded myself that he wasn’t neutropenic and so he should be ok.
The hyper hydration commenced and Herbie was relatively calm by now.

T+71
Was a day of drinking and monitoring drinking, it was pretty boring and we were all keen to go home. Thankfully the fluid was doing the trick, but as it did in GOSH, Herbie became positive, meaning he had more water in than had come out!
Out came the frusemide to encourage more output!
Bloods came back showing both WCC, NeUtrophils, lymphocytes etc and HB all looking good but platelets on the low side. They had been 175 but were now in the 70’s. Despite GOSH giving a lower limit to transfuse Shelley asked for it anyway as she said it was almost a given that he would need them tomorrow. First platelet transfusion since June, again, seemed like a step backwards.
Liam came in to stake his claim on most favourite doctor but ended up having a play fight!

Play fighting with Dr Liam
Play fighting with Dr Liam

Herbie also needed an ultrasound of his bladder but this was slightly disastrous as nobody mentioned him needing a full bladder! We also had to go to A&E to have it done as it was the weekend and we were in a corridor waiting, I was so scared another child may pop round.

Waiting in a corridor and NOT amused!
Waiting in a corridor and NOT amused!

T+72
Another day of not much happening. The drinks continued in and out and things improved, the scan showed no signs of deterioration. The pain was subsiding for him and we were told, if things continued well he would go home on Monday.
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T+73
Home time! Herbie had stayed up until almost 1am and slept soundly until almost 12.30pm! Not great for the fluid intake. He kept grizzling that he wanted to go home now. We needed a pump to administer iv hydration over night and it was arranged for it to come to our house the next day. We didn’t leave GOSH with one, most people did, so we needed training. That was all sorted but the community nurse came in to tell us and show us the pump and said that Shelley Segal wanted to finalise arrangements for the pump so we would go home Tuesday.
Both Herbie and I couldn’t hide our bitter disappointment. Herbie jumped on the desk in the room in a rage announcing “I don’t care if she saved my life, I don’t like Dr Segal!”
The community nurses ran off to beg her to reconsider and their pleading worked. Everything was packed up, notes written, just exit obs and some TTO’s to wait for. So we all calmed down and waited.
An hour before the meds were ready, I noticed Herbie’s breathing was faster and shallower. A sure sign of a fever. I asked Teresa the nurse in charge of our care to check him.
38.2, I can’t begin to tell you how devastated I was to watch it pop up on the thermometer!
This meant an hour of waiting, no calpol, then retest.
It was obvious he was still feverish an hour later so we had to abandon hopes of home and start a cocktail of iv’s.
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Another kick in the teeth and tears before bedtime, mine and Herbie’s .

T+74

Another spike in the night and he slept, noisily.
He didn’t wake much this morning choosing to lay huddled up and hot.
I wasn’t overly impressed by the doctor entering the room noisily at 7.30am and turning all the lights on!
Ultrasound and chest X-rays revealed nothing

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As per protocol he needs to stay in.
He woke after the ultrasound and seemed to perk up.
Liam came and announced that he knew he was Herbie’s fave doctor and he had a poster to prove it.
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Luckily I went home tonight for a brief time with the others.
He had spiked again….
Hopefully they will get this sorted.
Please keep him in yr thoughts.
Xxxxxxxxxxximage

Back to GOS

T+68 Day 13 since discharge. 1st BMT clinic post transplant.

Typically this morning Herbie chose to have a lie in! When I finally went in and woke him he was not happy and said he wasn’t going to GOSH. I could understand his feelings but had to explain that we had to go.

The journey was good and uneventful despite the heat. We arrived at GOSH in good time and went straight to Safari Outpatients.
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We walked in to find Lucy, a fellow BMT mum who had been on Fox and her son also waiting for their appointment. Herbie joined in their table football game until it was time for his weight, height and other obs to be done. His weight was up again since discharge and his BP was also a little high. We took our seats back in the waiting area.
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It’s not the first time it’s happened but it still amuses me to see Great Ormond Street flash up on my phone as an incoming call whilst I am actually in the hospital.
It was even more amusing when the nurse on the end said she was calling from Safari outpatients (where I was myself!). Did I realise I had missed Herbie’s 12pm ultra sound? …errr no, I wasn’t actually aware that we had one booked! It seems there had been a little miscommunication. The nurse apologised and said she had rearranged it for 2pm.

Olga called us in. She was pleased with Herbie’s progress and seemed totally calm about the blood in the wee, declaring he needed to use some steroid cream as it looked like a little cut. She was pleased that we had dropped two meds so far. Her aim was to drop the steroid amount by half as of tomorrow. When she sees us in three weeks she will drop the MMF. We asked about the iv’s. The plan is two more months of Amikacin and four more of Micafungin.
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We headed to ultrasound. The scan showed the spleen to be as it was last time but the wall of the bladder had thickening suggesting an infection. Olga called me to explain that it was quite a common problem. Sadly, common but painful to witness. The cure is lots of water so his fluid target was increased from 1.5 litres to 3 litres! That means constant drinking I suspect!

It took ages once we were back on Safari but luckily he had an ipad etc to keep him occupied.
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The bloods were not taken for ages. This delayed our ciclosporin until 4.30pm. Which meant the evening dose couldn’t be taken until at least 12.30am!
Then there was a problem with Amikacin dosage as it wasn’t standard and didn’t meet ward protocol.
We were filmed by Dolland and Katie for part of an Open University course and finally , at around 6pm, we left for home.

Today has totally wiped me out so I’m off to sleep.

BMT fact of the day

70% of people needing a donor won’t find one in their family.

Thank You Rufus!!!!

First call to the BMT reg.

T+67. Day 12 at home.

Tomorrow we head to GOSH for our first post BMT clinic. We have spent so many hours in Safari Outpatients in the last year but it does feel good to know that the actual transplant that we have discussed at all the previous appointments has taken place and now it’s about protection as the immune system recovers.

Herbie has continued to enjoy being at home and with school out we have all felt the benefits of lazier starts to the day. That said, meds are still due each morning at 8am and guitar lessons, Rock School etc continue throughout the holidays and of course we have the daily community nurse visits for the iv’s.

Ele the community nurse chatting with Herbie during his infusions.
Ele the community nurse chatting with Herbie during his infusions.

Herbie had what looks like his last letter from Hope this week. He was a little sad but understood why she doesn’t need to write to him any more. “I’ll miss her” he said.” She was fun.” Thank you Hope for all of your lovely letters and gifts. You have really helped Herbie through the hospital stay and he always looked forward to your letters xx thank you to your mum too.

We still have concerns over the amount of iv Amikacin poor Herbie has to put up with and had planned to discuss this at the clinic appointment. However yesterday our concerns were heightened as he complained of stinging when he had a wee. Obviously the first worry is an infection but he didn’t have a fever and seemed well. Later that evening we noticed a little blood after he had been so I made my first call to the BMT registrar.

When I finally got hold of a doctor I was relieved that it was Mark, a doctor we knew. He said that without seeing him it was hard to know the cause but he didn’t feel it was too worrying and said to get him reviewed by the nurses tomorrow and get a wee sample taken. We were to call the local hospital if he got worse or developed a fever.

I continued to take his temperature but it stayed totally fine and he slept well through the night.

We have really noticed Herbie’s hair growing in the last few days. The photos don’t do it justice. Although I still refer to him as my little Rice Krispie , Lily calls him her baby pineapple!
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Most of the time he is totally fine with being bald but every now and then he will mention it. He was happy to know it was growing. I also noted that whilst he was doing bits from his scrapbook for his holiday homework he had to draw himself. “Shall I do myself with or without hair?” he asked “It will be grown won’t it when I go back to school?” I said he could choose to do himself with or without. He said “but is it a lie if I put hair and I haven’t got any?”
I managed to persuade him it wasn’t.

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Today we have taken his big sister Lily to the JR in Oxford for her check up. Funnily enough all of the doctors stopped to ask how Herbie was and even Peter and Caroline the phlebotomists wanted to know! It was actually lovely seeing all of our regular doctors, nurses etc again and even better as Lily’s appointment went really well.

When we got home the community nurse, Morag, had tested his wee. Blood (obviously!) and protein present but rest negative. I guess GOSH will sort him tomorrow.

He went out, despite the glorious sunshine and heat, to lay in his hammock. The trouble was that Daddy was in there already!
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We managed to get him to reach almost the top end of his fluid target which is 2 litres today and this eased the other problem.
Off to GOSH in the morning…I will return tomorrow evening with an update!

BMT fact of the day …
The recipients blood type eventually changes to the donor type. That means if you had a blood type of A+ prior to transplant and your donor had a blood type of O, eventually your blood type would become O. It may take several weeks, possibly months for your original blood type to disappear, but eventually it will. In Herbie’s case this doesn’t matter as he is O- and so is Rufus so he will stay the same.

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What a difference a week makes…

T+63 and 1 week at home.

This time last week we were spending our first night at home together and Herbie was spending his first night at home in 9 and a half weeks. This past week has been so busy but today school broke up for summer so finally we feel like we might get to relax a little. For this reason I will take a few days away from the blog. I will of course return but finally things are ticking along nicely.

A call from Maria, one of our BMT nurses, today confirmed our first clinic appointment back at GOSH will be next Wednesday at 12.30pm. Ciclosporin level bloods were reported as high but I explained my first week blunder of forgetting to hold a dose back before the test.

Herbie continues to be hungry and spends most of his day asking what he can eat. I really do have my very own mini Buddha!

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He has thankfully chosen to stay indoors during this very hot weather and another plus is that he was thirsty quite a bit today, managing to hit his 1500ml in record time. Today’s target was reached by 2pm!

We were grateful this week to receive many welcome home cards from so many old friends and family and even a lovely one from a member of staff at Herbie’s school. Herbie was especially pleased to get a letter from Hope. It arrived via GOSH thanks to Bev in the office. He says that he does know about geocaching and his big sisters are in the scouts and helped place the ones you mentioned!

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Today’s BMT fact:

18 to 44 year-olds are called as a bone marrow match for a patient over 90% of the time.

Age guidelines are not meant to discriminate. They are meant to protect the safety of the donor and provide the best possible outcome for the patient.

Think about becoming a donor and giving someone a chance!

It’s all about family…

T+62

I have already blogged many times that during our 9 week stay in GOSH I had the privilege to make some new friends and we often chatted in the Robin Ward kitchen, used by parents from Robin and Fox Wards. Sometimes it was a passing “hello, how’s your son/daughter doing today?” as we made a cup of tea , washed up a plate or came to grab something from the fridge. Other times it was a longer , more in depth conversation about the process of BMT, the drugs, the side effects and occasionally, with those I got to know better, it was about family and how they reacted, behaved etc. There were many different scenarios, although most children there having BMT had suffered cancer or leukaemia, some had rare immune deficiencies like Herbie. There were also many different family/friend scenarios and I realised quite early on how lucky we were.

Those who know us well know that we are incredibly lucky to have an amazingly supportive family. Both sets of parents live very locally to us and all four are very “hands on” when it comes to being grandparents. When we spent our three weeks together at the start of the BMT it was our parents who stepped up as interim carers, taking on roles and jobs they clearly had the credentials for having raised 6 children between them. We know they had some lovely times with the children but they also got the backlash of our absence and the emotional outpourings that were inevitable from three children aged 11 and 6 whose parents were away looking after their baby brother! It’s important to know that they were also dealing with their own worries about us as their children and obviously Herbie! We can’t thank them enough, even know we know they will play their part down as “just what we do”. Let me tell you, after talking to lots of people in the same boat as us it’s not what all grandparents do!
As well as having grandparents helping us we also had our siblings and their other halves. Between us we have 5 siblings, all of whom are married so we had a sibling team of 10. They were there helping us in a plethora of ways from collecting children from school to organising a deep clean of our house prior to Herbie’s release. Parcels, phone calls, Face Time, text messages, meals, treats, fundraising with girls for our local hospital The John Radcliffe, you name it, they covered it! Don’t forget that 4 of them (along with Dan) are running 10K for GOSH in September. Plenty of time to sponsor them … Just click below.
JustGiving - Sponsor me now!
We couldn’t do it without them.
Our extended family have also been fantastic! Aunties and Uncles, cousins all chipping in and helping out.
My mum also mentioned how much it meant to her and my dad (and I know that Dan’s parents would say the same) when people stopped and asked how Herbie was or were complimentary about the strength of our families.
We are incredibly lucky to have such wonderful people around us.

So on Day 62 we trickled along quite happily.
Herbie patiently awaited the children from his school who were walking back from the church via the fields behind our house. From his treehouse he waved like royalty as the school passed by shouting “Herbie ” and ” we love you and miss you” whilst waving frantically!
His face was a picture of happiness x

Other than that the day passed uneventfully, just more eating and drinking, shouts of “I’m hunjey” and plenty of Xbox and Skatooney. I would be worried about the amount of TV and Xbox he’s having at the moment but then I think it’s so hot outside it’s better he stays in and doesn’t get exposure to the sun!

So I’ve decided, in place of the daily bloods I will give you a daily BMT fact…

Today’s BMT fact.
A basic BMT costs in the region of £250,000. (And people knock the NHS!)

And I’ll leave you with a random BMT quote from Herbie…

Today’s random BMT quote from Herbie as we talked about the new cells growing and telling Herbie’s body what to do.

“so if I’d had Frank’s bone marrow (Frank is our cat!) instead of Ru’s do you think I would be walking on four legs by now?”

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Fundraising , food and friends

T+61

2 months since transplant

Two months ago today we were taking Rufus down to theatre to donate his cells, watching Herbie have them via his Hickman Line after just over a week of chemo. In one respect it seems a million miles away and in another it seems like yesterday.  Time is passing strangely right now. In hospital the time didn’t matter much to me. The meds were all dealt with by the nurses, the food arrived via the housekeepers. There was nobody needing to be collected from school, no trips, birthday parties, clubs etc. Then all of a sudden you are thrown like a screwed up piece of paper in a wastepaper basket, back into your old life and time really matters! School is waiting for your children at 8.50am and again at 3pm. There are meds to prep that need administering at 8am, 1pm, 3pm, 6pm and 11pm. There are meals to prepare, Community Nurses daily at 2pm, shopping to get, lists to write, cleaning to do…

Herbie is oblivious to all of this, choosing to spend many a happy hour playing his new Xbox 360. His meds and meals still arrive, Skatoony is still on at 9pm and he still has no school, parties etc to worry him. The school holidays can’t come soon enough!

It’s easy to think that we are done now we are out of the hospital. Yes we have managed the first hurdle but there are more to jump. Herbie is still the owner of a very immature immune system which means that it might not respond properly to infection.

We are however already beginning to reduce some meds. Two of the three doses of metaclopromide, an anti sickness med given during the chemo and retained, have been cut and we are hoping to cut the last dose shortly.

He used to have his fortnightly subcut immunoglobulin replacement therapy, administered by myself or Dan at home until he went to transplant. Now he has 3 weekly infusions through his Hickman Line. Our dates arrived today for the first four appointments in the children’s Daycare Ward at the JR, our home hospital.

We had post today, from a Y2 pupil at the school in which my friend Heather teaches. He had arrived with the parcel after a talk about Herbie in school.
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Thank you Charlie!

Later there were goodies from cousins Esta, Issy and Martha
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A brilliant hat from Gabriella and Samuel and their mum and dad…
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And a visit from Oscar who came to give Herbie a lolly!
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I also was really emotional to get some lovely gifts and cards from parents of the class I stopped teaching in November last year and from my colleagues xx

Ele, our community nurse , came with some blood results.

HB 113
WCC 14.03
Neutrophils 11.68
Lymphocytes 1.48
Platelets 173

Herb had another brilliant day with drinking and eating. His kidney function is looking ok now.

In many ways so much to celebrate, The Blake School in Witney held a superhero day in their Foundation Stage class to raise money for GOSH after hearing about Herbie . We were so touched by this! Then where my auntie lives they had a fundraiser for GOSH too and most of all, my boy is back. Sadly today was not all happiness, the BMT process gave me the chance to meet new people going through the same as I was. They offered friendship and interjected the stay with fun, smiles and an ear to bend or a shoulder to lean on. Sadly another of these lost their baby girl this morning. They are in my thoughts .

Don’t take your life for granted.