Tag Archives: Moshi monsters

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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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!

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
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
Super Dog Dog to the rescue
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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!
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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…
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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?

Drink up, eat up…

T+18 was here and with it the milestone of four weeks in isolation for  Herbie at Great Ormond Street. I remember when I was first told that he would be in hospital for a minimum of 8 weeks I just couldn’t comprehend it. Now we are halfway through those 8 weeks already! Of course we know that the figure they gave is a guideline, it could be more but we have managed the first four and honestly it has been ok!

When I woke this morning to the sound of a pump alarming. Just for a moment I was surprised that I was back at GOSH. I was honestly thinking “why am I here?” Then of course reality dawned, I looked at the time, saw it was early, saw Herbie was asleep and decided to try to sleep more too. I was rather unsuccessful as about 10 minutes later Kitty Face Timed us!
Herbie was obviously sleepy from his late night last night so I let him sleep a bit longer whilst I showered. It’s nice to get some of my things out of the way before he wakes so shower, new clothes and strip my bed down and wipe down the mattress are all ticked off before his eyes open!

When he finally woke he asked for breakfast, coco pops and milk please. I headed to the BMT kitchen, got his and then my breakfast (from a different kitchen) and returned to find him still looking sleepy. I weighed him and measured his girth as we do every morning and then let him eat.
He’s been having the milk feed over night for a few days and water boluses to top him up and this has left him with a runny tummy which has upset him. I explained that if he ate and drank more he might not need the extra feeds. A bowl of coco pops and milk went down a treat. He was still tired but keen to get in the bath when Helen, the hospital school teacher arrived, an hour earlier than usual. He gave me the “Herbie scowl” when I told her that would be fine. He demanded I dressed him before I left, which was a reasonable request!

I headed out into rainy London and found ancosy armchair in Costa to pass the time, stopping briefly at a stationers on the way for more lovely white board markers to pimp my white board!

I returned an hour later expecting to find Helen in the ante room just leaving but instead I found Jo, his nurse for the day , and Rose the HCA busy doing a full set of obs on him and Helen long gone. Turns out he had said he felt unwell so Helen had alerted the nurses and then packed up. As Jo explained what had happened she said ‘so we came to do a full set of obs but everything is perfect.” It was then I noticed Herbie giggling!

Turns out he wanted a bath and me not to go. We ran the bath and he jumped in and relaxed. I stripped and remade his bed, washed him, moisturised and then dressed him in new clothes.
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The doctors came in, Olga was pleased to see him and said that he was doing well. Apparently they have finally got a positive culture from the Hickman Line which showed that was the cause of the fevers. She said CRP was still coming down and they were happy it was under control. She also said that he would have more GC-SF tonight to try to keep the Neutrophils above 1 until the CRP was back to normal. Apparently our first bloods for engraft had been taken, she said they wouldn’t be back for a few days at least and that we were not to be disappointed if we did not have 100% engraft as it didn’t mean it wasn’t working. Finally , Olga said that they would begin to replace some iv’s with their oral counterparts, very slowly but in readiness for when you go home!

Lunch arrived, he ate well and was also making good progress with his drinking.
After his sandwich he fell asleep again and stayed that way for almost 3 hours. After the chat with Olga, the doctor, I was keen to see what the blood results were. We had hoped to see them rise a little today, especially now he would have GC-SF as a boost later this evening.

HB 88 (rising by itself!)
WCC 1.16 (rising!)
Neutrophils 0.73 (not above one but rising BEFORE GC -SF)
Lymphocytes 0.14
Platelets 42

All looking very promising!

The postman arrived, much to Herbie’s excitement!
He was thrilled to find, not only a letter from his letter writing friend Hope all about her birthday, but a wonderful hat , made with London themed fabric and some chocolate bars and sea creature pictures that we stuck on the window. Thank you Hope and thank you Tanya. The hat was so apt as Herbie loves to play a game that he invented called “‘ello Guvnor” when in London which is along the lines of ‘yellow car’ but involves shouting “Ello Guvnor” every time you see a London black cab or “yellow Guvnor ” if it’s a yellow one!
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He was also thrilled to receive a Moshi Monster school set from Linz, Richard, Sophia and Louis (and I had some yummy chocolate and some lovely messages from our class)! Thanks Guys xxx
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Postcards came from Auntie Lucy, Uncle Joffy & cousins Jude and Charlie from Croyde and also from Toby and Lucy a fabulous postcard of Ben Nevis. Both now proudly displayed on the wall alongside more correspondence from Grandma’s dog Flossy!
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The fab news is that Herbilicious managed to drink to his target today and eat very well too so no water bolus or night milk feed required tonight. Yippee!

Herbie drifted off to sleep after telling myself and his nurse for the evening ,Hayley, to stop chatting. Hayley confirmed for me that the infection that caused the fevers was found on May 30th in the white lumen (kenicky) of his Hickman Line.

So the board is all written ready for tomorrow, Day T+19 is upon us, please let the good days continue!image

Enough blue sky to make a sailor a pair of trousers.

T+9… I woke to find myself still on the up and down horses. Sigh. It appears that wishful thinking doesn’t work. I asked Vivi, our nurse over night, how he had been, it was 6am. He’d spiked with temperatures twice during the night, 2am and at 6am and was being given paracetamol by iv when I asked.
I was so tired from sleeping with one eye open and yet I hadn’t actually taken any info on board from being awake. Lesson learned.

I was woken by Dan entering the room around 7.30am. I still felt tired and Dan told me to sleep but I dozed for a short time before getting up. Herbie looked pretty rubbish and he complained about his throat and despite wanting to go to the toilet he couldn’t get up. He was quite a sorry sight. We had Holly and student nurse Kelsey today. They did a set of obs and Herbie still had a temperature, despite paracetamol less than 3 hours before. It all felt too familiar, memories of last November came flooding back and I admit I probably felt at my lowest ebb since arriving here almost 3 weeks ago. He wasn’t able to follow our daily routine for the first time in 19 days, he was too unwell for breakfast, a bath , moisturiser etc. I managed to get a weight but he literally wanted to be lifted onto the seat.
The morning passed slowly. We had to wait over an hour before he was allowed more paracetamol and he got hotter and more unhappy. His throat hurt and he had a few ulcers in his mouth. This is a condition caused by the chemotherapy known as mucositis.
We watched the blue sky and white fluffy clouds out of the window. A lovely Sunday on a bank holiday weekend outside but inside a grey cloud was stuck over our head threatening a down pour.
The paracetamol didn’t work straight away, when obs were taken 30 mins later he was still too warm, his heart rate way too high (SATS thankfully still 100%) and his BP a little too low. This meant his CEWS score was hitting 3 which is not good. A CEWS score alerts the nurse in charge/registrar to a child with potential problems. 0 is what you want!
Herbie’s lunch arrived and you could tell he wanted it. He tried so hard to eat a chip but his throat was too sore. He drank 20mls of apple juice in 4 hours! This meant he needed more water via his PEG.
We were also given gel sachets to mix and sponge inside his mouth to help with the pain.

As the afternoon wore on he improved. The doctor started another new antibiotic. vancomycin. This was another iv antibiotic. When the doctor visited he said it could be an infection in the throat or possibly his old micabacterial infection flaring due to the low cell counts.

Blood results were a bit different today…
HB 81 so literally 1 away from transfusion
WCC 0.25
Neutrophils 0.20
Lymphocytes 0.03
Platelets 16 under the transfusion threshold
So we knew that a platelet transfusion would take place this afternoon. We also get a list of other blood results that I don’t bore you with daily but today his magnesium was low so he also needed a quick magnesium iv as well!
Thankfully his Ciclosporin levels were high again so they suspended his evening and tomorrow mornings iv until a new level is taken tomorrow.
Neutrophils are finally heading nearer to zero. Holly estimates they will be zero by Tuesday, Day 11.

Herbie continued to pick up, although he was still not drinking. He ate half an ice lolly which was soothing and one chocolate button but he really wasn’t able to eat much. He tried an egg sandwich but was still not enthusiastic.

We managed a bath and another mouth care (under protest)
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But it was too late to get dressed making Day t+9 also Herbie’s first day he stayed in Pj’s all day since arriving.

The platelet transfusion happened and as the day shift said goodbye his temperature , which had behaved since this morning, began to get a little warmer. I felt sad again, I had so hoped we had turned a corner.
We went for dinner in the parent room. We chatted to our neighbour in the room opposite, Elsa. She is from the south of France and has been here for weeks with her baby who is only 6 months old. They are not having transplant, just immunology issues. She was excited to be going back to a hospital in Paris tomorrow. Three patients have left Robin since we arrived.

Vivi was back on night shift, she did the obs and we were scared of what his temperature would be. Jubilation to learn his temperature was 37.5… Not over 38 and no paracetamol for over 9 hours! Yippee! Perhaps the day was coming to a promising close?

So tomorrow brings two things…
A) double figures at T+10
B) time to temporarily say goodbye to Dan as he heads home for a few days.

Tonight I am left with a childhood saying in my head,
“There’s enough blue to make a sailor a pair of trousers”
It’s optimistic … I think this evening I too have seen that bit of blue sky in our grey cloudy room. Hopefully tomorrow may bring some glorious blue skies …

Parcels, painting and positivity

T-3 arrived with a weary voice telling me he was hot from his bed. I looked across to see that he was still on an iv, I checked the time, 5.30am! I investigated the pump to see that cyclosporin had started as planned. Herbie’s hand didn’t feel hot and he soon turned over and was back in the land of nod. We managed to both sleep in until 8.30am which was great and much needed.
The routines of the day are now well rehearsed as we can officially say we have been at GOSH a week. Herbie was excited to see the nurse, Rehka again today, holding a letter with his name on it. His first bit of in patient post.

A letter from Floss
A letter from Floss

A card from Grandma & Grandpa’s dog Floss and a Freddo.
The morning passed quite quickly , full of iv’s as yesterday, Amikacin, Fludarabine (chemo) and the last dose of Bulsulphan (chemo), a plethora of oral meds , temperature taken, SATs & heart rate & blood pressure checks. We even had the Hickman Line dressing changed again. We read a book and even did a little painting!
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In between there was plenty of time for him to have fun banter with the nurses.

Dressing change again!
Dressing change again!

The teacher arrived again with an arm full of dinosaur books and Dan and I headed out for fresh air. We passed Dan’s new abode, The President Hotel. He claims he’s staying in the Nancy Reagan suite but I think it’s more likely he’s in the Bill Clinton love dungeon myself!
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On our return Helen , the hospital teacher, told me how lovely she thought Herbie was and how she guessed everyone thought the same. (Proud parent moment) she also said “He’s so polite” Apparently his class back home are doing dinosaurs so she was going to cover the same but when she asked him what he would like to learn about them he turned and said very honestly “nothing thank you” . Hehe!
As we passed by the nurse station on the way back we were handed 3 parcels that had also arrived for Herbie this morning.
Great excitement ensued as we came back into his room, his lunch of pizza, beans and chips was put on the back burner!

Treasure through the post
Treasure through the post
Fab new train book
Fab new train book
Moshi alert
Moshi alert

He was absolutely thrilled with his fabulous gifts and cards, thank you Nic, Kirstine & Ofelia xxxxxx
At 2pm Veronique, the play specialist, arrived and we left Herbie for an hour and spent time chilling out in one of the parent rooms. I got his blood results and saw that the HB & platelets remained good and the other counts were going down as suspected.
On Tuesday afternoon it is the consultant ward round. The film crew arrived with a radio mic and Paul Veys arrived in the room with another doctor. Herbie went into overdrive with the cheekiness! He demanded Paul Veys “put them up and fight like a man!” In more serious news he was very pleased with how the conditioning phase was going and how Herbie had managed the ATG and chemo saying it was text book! All music to our ears.

We enjoyed FaceTime with the other three and even a catch up with our lovely community nurses whilst Lily had her subgam at home. How would I get through this without the ipad and FaceTime I ask myself!

So we come to the end of T-3 and head into T-2 in a buoyant mood, yes of course there is a long way to go but we hope that with routine, positivity, the support of friends and family , the care and guidance of the team here at GOSH we can ride this huge wave safely (even if at times precariously) back to the beach!

Thank you xx
Thank you xx