Now is the time to understand more…

T+14
“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”
― Marie Curie
Last night I likened myself to a non swimmer in a rough sea and I was wishing for a mill pond and armbands.
Someone, somewhere…they heard my plea.

I woke to find a sleeping boy. He was cool and for that I was grateful. He still looked unwell and his lack of hair was still a shock. He’d had paracetamol at 4.45am. I got up, showered, sorted the room and still he slept. Helena, who cleans the room each day came in and sighed when she saw him. “still no good huh?”she muttered. The one thing I am so proud of about Herbie is how he seems to be liked by so many people. The nurses say they ask to care for him and the teachers say how lovely he is and even the lady who cleans his room at the hospital has a soft spot for him.

Suddenly around 10am he sat up and announced that he needed to FaceTime Lily & Kitty about Adventure Time! He wanted it on TV immediately and snuggled in the sheet & watched an episode.

I knew he was more alert than yesterday. He got up, got weighed and got into the bath, had a wash and then a little moan about his hair before getting back on his bed to watch TV and have a little breakfast!
I felt excited that he was even asking for breakfast! When the Play Specialist asked if she could come in as she had asked the previous few days he actually said yes! She said “game or arts & craft?” “arts and craft please” was the reply!

He made a picture frame and a butterfly and then returned to his ipad.
His drinking and eating were much the same as yesterday so he required a water bolus through his PEG at midday.
An amazon parcel arrived from Cousin Esta, Moshi micro theme park! Thanks Esta!

Daddy arrived back with news and gifts from The Shire and we were pleased to see him.

Thanks to Kelsey & Amanda xxx
Daddy had shaved his hair quite short too to help Herbie feel better about his.
He arrived just in time for the ward round. It was Paul Veys last visit as his month is at an end and a new consultant comes on for June. Shame really. He told us that he is almost certain the fevers are engraft of the new cells. No real sign of infection can be located but he is on all the right medicines if he has one. Herbie’s eyes and face had become itchy and again he said these were signs of engraving of the new cells.
We discussed the scan and ultrasound, scan as we knew was great, ultrasound showed granulomas in his spleen probably cause by the micabacteria. He said we should see counts rising now and that they would add in a new drug to stimulate neutrophil growth. With our minds at ease we could settle to some time together

As the day wore on Herbie chatted to Rehka and Kelsey (his nurses) a little and asked to sit on my bed

And I skipped off to get the cell counts before we did.

HB 86
WCC 0.41
Neutrophils 0.22* these are rising!
Lymphocytes 0.04
Platelets 35

So fingers crossed…a mum from the other ward, got the 100% engraft news today, she is Day 21 so it’s exciting! Keep watching those N’s & L’s! Herbie sat on my bed before to watch TV but the day had worn him out and soon it was time for bedtime snuggles and I was leaving to let the boys have a Boys Night In.

I arrived back home with excitement to see the others. The boys Big Night in had begun.
I was greeted by tired but happy faces but I know my phone will be by my side all weekend asking Dan for updates.
So I am grateful to everyone for their support and care yesterday, let’s hope T+15 is another good day for my boys x

Like a non-swimmer in a rough sea

T13… I’ll be glad to see the back of today. I woke at 4am to the sound of the fan whirring. I hadn’t put it on, Herbie can’t reach it so that meant one thing, Herbie had spiked and the nurse had put it on to cool him. That’s exactly what happened. My dreams of 24 hours fever free were dashed and to add insult to injury he was 39.5 again by 6am. I couldn’t believe it.

He was very groggy after such a high temperature and slept.
The doctor popped in and told me that the new antibiotics were clearly not doing anything as he was still spiking. I asked what would happen if he continued and she said usually a brain scan and lumbar puncture but that he was too well, alert and not vomiting. The day seemed to be starting badly! Rehka was our nurse again , one of Herbie’s favourites , and she came in to do the hair shaving for us. I secretly wanted to cry before she even started but I knew that due to all of the hair he had lost overnight, I had to encourage it.

Rehka began and his face was so sad.

Finally the deed was done. I was heartbroken even though I know from Dan’s and Hugo’s experiences that it will be back soon
, his hair really was so much part of his character.
Now he looks all huge eyes and the back of his head is flatter than it should be! He actually looks ill.

Don’t be deceived by the picture above, after it was taken he went into the bathroom for his bath, sat on the edge of the toilet seat and cried. He cried for his hair, he made me cry too. Definitely a real low point of the day. I tried to jolly him along in the bath with games and jokes etc but it was clear that he was exhausted and wanted to go back to bed. I changed his bedding as it was so hairy and he snuggled into bed. Before we knew it Rehka was back to change the Hickman Line dressing, a weekly occurrence and to do a finger prick for drug levels in the blood. He wasn’t happy but clearly lacked the energy required for a full blown complaint.
We tucked him up in bed and he slept. He had a 250ml water bolus through his PEG again as his fluid intake is down but he actually began drinking more again today so he only needed the one.
I drank a lot of tea and played candy crush and watched Small sleep and willed him not to spike a temperature again. The post arrived. Apparently the post guy now just says “all for
Herbie
Baby Arthur was busy buying, wrapping, writing and posting and Herbie loved it, thanks Arthur, Mand, Issy & gem x

Thanks Arthur! (& Issy and Gem & Mand)

Thanks to the lovely Mrs J and family

Mrs J sent parcels for Herbie, me and a small gift for Dan. The magazine was perfect Mrs J and kept me going on a long lonely afternoon.
Caroline & Mamood sent the above and I later heard that Ru & the girls all had something from them too. Thank you x
They also sent me yummy hand cream.

Besties Lily & Sam sent lovely package and great gifts too. He was also thrilled with another letter from Hope.
He says “Hope, I have been to Thomas Land too but I went at Christmas time. It is great there. I’m glad you had a good birthday. ”
I got a gift too from an unknown source! If this was you please tell me as I’d love to thank you personally!

Herbie really didn’t do much all day but sleep. I collected his blood results and as I was told they had jumped down again.

HB 87
WCC 0.20
Neutrophils 0.08
Lymphocytes 0.02
Platelets 23

Platelets again tonight, blood transfusion probably by Sunday.
Will N’s and L’s ever get to zero?

Today really has been a pretty rotten one. We could have a long while to go in this rubbish phase but I hope we can pull through sooner. I had to get out for fresh air this evening. It’s very hard to stay in one room all day staring at your poor baby sleeping. Thankfully I drank so much tea I ran out of tea bags and had an excuse to pop out & get more!
Cobwebs cleared I returned back to my room. Herbie was hot, 37.9 and by the time night shift came on he was very hot. I was sad, for the umpteenth time.

Spent time on the phone and FaceTime to the kids before shutting down the lights and settling down to write this.
The platelets are just going up. He’s still only 37 but can get hot!

I’m amazed that tomorrow we are two weeks post transplant. 14 is my lucky number so hoping for some better news or no temperatures.
I need to sleep…I have felt like a non-swimmer capsized in a rough sea today. I am so hopeful for a millpond and some armbands tomorrow xxx

Hair today…gone tomorrow

T+12 arrived properly. We are almost two weeks post transplant and cells can start recovering anywhere from Day 14 according to the sacred BMT booklet!
I had known that the obs throughout the night had been good and so I finally relaxed (despite all of the noise from the deep clean of the room next door that went on until the early hours) and slept well. I woke to the sound of Herbie’s breathing. It was fast and I knew what that meant…a temperature. I tried to convince myself that I was wrong but I know the signs of him getting and having a fever all too well. I tiptoed out of bed to touch his face…very warm! I looked at the iv’s and the top machine had “iv paracetamol” on the label. When the nurse cam in she told me that at 6.30 he had spiked a 38.8 , a fifteen min paracetamol infusion was given and he was tested again…39! This is Herbie’s pattern all over he responds slowly to paracetamol.

So 18 hours after the last fever he had had another and my hopes that it was knocked on the head were again dashed. The doctors ordered a CT and abdominal ultrasound to try to get a heads up. The doctor did tell me that they were probably being overly cautious but it’s hard not to worry, he’s already on most of the drugs that they use to fight infections.

As the paracetamol kicked in he woke up and was a little brighter. His pillow was literally covered in hair!

He asked for the curtains to be drawn back and to sit in a chair with his iPad. He was clearly not himself though but that’s our Small, he fights every step of the way, he’s tough as old boots.

He thought about breakfast but wasn’t very interested. He tried drinking but he just not managing it. The nurses are convinced that it’s because his mouth is sore and maybe they are right but Herbie won’t admit pain readily and shakes his head when asked and says “nothing hurts!” (With a right old scowl on his face!)

The post cheered him up. One package from America no less, thanks Lisa & family, one from Amy & co and one from Gay. Thank you so much guys. We tested the glow in the dark stickers tonight Lisa and they are great! Amy, clever lady finding a Moshi toothbrush! He was thrilled! Gay, as ever you send the right things and I loved sitting and reading your card, tomorrow I may just nip to Costa dear friend, on you xxx

Finally it was time for the CT. Herbie has had a few of these, and it’s not normally a problem but today proved to be a different experience. For the first time in 3 weeks Herbie was allowed out of his room! He was eager to wear his new GOSH hoodie and for the first time in 3 weeks he put on shoes!

We joked about whether he was going to do a runner. He smiled and said “no but you can go to the cafe and get me stuff later”. He went in a lift to the CT room and was asked to wait in a side room whilst they cleaned the scanner. He sat on my lap and fell asleep.
The film crew arrived to film the CT.

On entering the CT room Herbie started to get upset about the contrast dye that goes in the Hickman line, he complained that it was too hot. With lots of coaxing and a few tears (for once not mine!) we got it done. Herbie was we too exhausted to walk back so a porter arrived with a trolley. Herbie was a little concerned on the journey back to Robin Ward!

Once back in his room he just slept and I lay on the bed talking to him and reading etc.
Then two people arrived with the mobile ultrasound trolley, it was a laugh watching them manoeuvre it through the small ante room. Once in I braced myself for the usual upset that an ultrasound brings but he just slept through it , barely batting an eyelid.

The rest do the day was literally temperature watch and hair loss watch!
The hair loss is thick and fast now but it wasn’t until this afternoon I could see it thinning. It’s literally everywhere, in eyes, mouth, on both beds. We decided that tomorrow it’s getting a buzz cut.

As the afternoon went on I was interviewed by Catey on camera again and then the platelets arrived. Herbie had been struggling a little today with nosebleeds so I guessed we would have platelets pretty soon. Herbie thinks platelets are apple juice!
Ever wondered if you can donate them? Read here to find out if you can.
http://www.blood.co.uk/platelets/can-i-donate/
During a BMT children need many platelet transfusions as these are often the last thing to recover.
Herbie is also blood type O- which can be universally given to anyone regardless of their blood group, however a person who is O- can only ever have O- products! So donors get out there, especially if you are O-!

Platelets

Herbie slept through it all. I drank copious amounts of tea and chatted to the nurses when they came in to pass the time. Rehka & student nurse Lauren today. I also collected the blood results and was a little confused by them.

HB 91
WCC 0.31
Neutrophils 0.20
Lymphocytes 0.05
Platelets 13

So my confusion was that WCC, neutrophils & Lymphocytes had all risen. I was expecting some flatlining of neutrophils and lymphocytes at least. So why rising?
I asked Rehka who said it was normal and they still had to get to zero. It feels like we are going the wrong way! So we will have to wait until tomorrow and see what happens.

Herbie woke briefly asking for ready salted crisps and gingerbread men. I dutifully went to The Lagoon to buy some. On my return I opened the crisps, as directed by my VERY bossy son, and he held them for two seconds and fell asleep. An hour later he woke, took a crisp out, took a bite, chewed and swallowed it and fell asleep! Hilarious behaviour!

So we had a quiet evening. Herbie is on his second night of milk feeds through his PEG as he’s not really eating.

A new antibiotic/anti fungal drug called Meropenum , which Lily was on for ages, has been started this evening. It’s now midnight and Herbie’s temperature was just taken by the nurse Hayley. 36.5 again so perfect…it’s now 18 hours since the last spike…I don’t want to tempt fate but can we make it to 24?
Sweet (cold to tepid) dreams

Without the rain there would be no rainbow

T+12 started with a fever. Ugh! After the good day yesterday we had been quite hopeful that we would have another good day today but as the night progressed it was clear this wasn’t going away overnight!

The blood transfusion was ready to go as soon as the iv’s were completed but before they could finish he spiked a temperature. At 38.8 I knew we needed to get paracetamol in quick but there were no lumens on the Hickman line available for quite some time so we had to go through the PEG which isn’t as effective. This proved to be true as two hours later when they checked his temperature it was 39.9!!!!
Obviously it was too soon for more paracetamol and ibuprofen doesn’t seem to be an option during transplant. I had to sponge him and put the fan on. He slept throughout. Strangely so did I after a while.

When I woke at 6.45 I was told he had finally got rid of the temperature during the night without needing more paracetamol. I went to give him a kiss and he felt hot. I told the nurse who checked again, he was 40!!!
As soon as a lumin was free on his Hickman line he could have paracetamol.

I went to look at him and he was all red, hot and sweaty and covered in hair that had fallen out over night! It really was stepping up.

He didn’t want to wake up, Holly was back on and looking after us for the third day running which was great. She came in to check his obs. His temperature was still 38.8 an hour and a half after paracetamol which wasn’t great. His body seemed red, his scars on his neck looked redder and almost irritated , as did the one on his arm. Every time he moved slightly more hair got left behind on the pillow. His little face looked sad and it was making me feel the same.

He woke briefly to go to the toilet, he had diarrhoea and was dizzy as he stood up and said his head hurt. I had to weigh him too and he looked very miserable so I quickly changed the hairy sheets and pillow case and put him back to bed. The doctor came in but he really didn’t even open his eyes. She said the Paul Veys had warned that this might happen and that things were in place and if more fevers persisted we had other antibiotic options.
Holly came to do more obs, I noticed the SATS which were always 99 or 100 were 92! I queried with Holly and she moved the probe, then changed it. There was no change and she told me she believed it was accurate and therefore she needed to keep him monitored as if it dropped below 91 he would need oxygen. I was absolutely mortified! How had this happened so quickly?
Thankfully after a short while he started to pick back up until he was sitting at 97 again . Big relief!

He was still warm and sleepy as the morning went on, occasionally opening his eyes, nodding or shaking his head but that was it. Bev arrived excitedly with his post but he didn’t stir so I put it to one side until he was ready for it.
As midday approached he was given iv paracetamol, 15 mins later it was done and his obs showed he was 36.6!!! Hurray!

My mum arrived and I was so pleased to see her! It is lovely to have another face from home in the room. Can’t wait for us to get from these Green precautions to Yellow when all siblings and grandparents can come in too!
Herbie woke briefly to acknowledge mums arrival but then went back to sleep. Mum sat and stroked his head and spoke softly to him as I tidied up the room and heard news from home.

Herbie’s hair continued to fall out and I need to keep it off of his face as it was irritating him. I asked again if he wanted Holly to buzz cut it? Do a Mohican? He was adamant he didn’t want it cut off. The BBC crew arrived to film if Herbie was ok with it, he said he wasn’t!

The consultant ward round was due to take place this afternoon. Herbie began to wake up about an hour before and although he looked pretty grim and kept pulling large clumps of hair out he was awake, cool and relatively happy! He just wanted cuddles with Mimi. A new face always does the trick!

He started to show an interest in his post so we began opening. His interest grew and soon I had a pile of wonderful things and I wasn’t sure who sent what so please forgive any mistakes!
Sarah, Ry, George & Ruby sent this amazing superhero book and a set of Moshi colouring pens. We hope to have a go tomorrow! Thanks lovely peeps x George’s message is being used as our header today too.
Thanks also to Debs, Andi and the kids for the lovely owl card and selection of goodies and to Alison , Dave & their brood for the Moshi mash up cards and cool Mr Potato head card

Finally to my cousin Lorraine & gang for the fab stickers.

Consultant rounds were upon us, Herbie was at this point in a chair as he had been on my mum’s lap having his hair brushed off his face and neck.

Paul Veys said that he thought the whole temperature thing was part of the engraft of the new cells and we joked about Ru’s cells having a party as they rampaged around Herbie’s body. The redness etc was all part of the new cells finding old damaged sites such as scars and trying to mend them. He said it could be an infection but as y nothing had grown so he felt it was more typical and more likely to be engraft! Brilliant news and I also felt much more content knowing this was all par for the course at day 11! It was decided that as he was not keen to eat or drink much he would start overnight milk feeds using the PEG from this evening. Once again I’m so glad we decided to have it done, why I ever worried about my choice in hindsight I’ll never know!

Relieved I called Dan with the update and then mum stayed a bit longer and we bathed Herbs and did the usual morning routine before bed instead.

Bloods were back and for the blood result junkies like myself …

HB 92
WCC 0.11
Neutrophils 0.02
Lymphocytes 0.03
Platelets 23

All as planned, platelets low again but this is expected in transplant as they are one of the last thing to recover so we are likely to get a transfusion tomorrow.

Mum left and Herbie and I settled down for the night. He wanted to get into bed and watch TV.
As Holly letter she took his temperature, 37! Result and we said goodbye and waited to greet our night shift nurse.

I tidied up the room and Herbie finally drifted off in front of the TV, occasionally wriggling because hair was on his face or ears , goodness only knows how patchy it will be by morning.
The night shift began and his temperature was actually low , 35.9 but that’s fine and his SAT’s were good at 99. Relief for a few more hours at least.

I listened as the next door room was stripped and cleaned as another patient had gone home. It’s such an intense clean that happens in these rooms when you leave. They are cleaned for what seems like hours and then swabbed. Nobody can enter once that is done until the results get back.

Now I type this at just gone midnight, slipping into Day T+12. The milk feed is running and the iv’s are almost over for tonight. Hayley, our nurse has just done his obs…
Heart rate 103, SATs 99 and temperature … Drum roll please,
36.8! All perfect! (Over 12 hours since paracetamol too)
Fingers crossed it’s the same at 2am, I’m aiming on some shut eye tonight!
Never forget you need rain and sun to make a rainbow.

I can see clearly now the rain has gone

T+10! We are in double figures, ten days post transplant.

I woke around 6.15am to find paracetamol ready in the blue tray by Herbie’s bed and I knew he must have spiked again as he had done last night! I decided to think positively, antibiotics don’t change things dramatically in two doses so I had to be patient. I went back to sleep. Dan came in again whilst I was still in bed so I got myself moving and started on the list of jobs even though I was expecting another day like yesterday.

Thankfully the day went a little differently. For a start Herbie was sat up in bed asking for breakfast! He had a yogurt and a very small bowl of Coco pops but it was breakfast none the less. He said his throat still hurt a bit and luckily he’s now prescribed regular painkillers for it so I think that really helped.

He looked brighter and was giggly and happy to move which yesterday was a real no no. His fluid intake is still well below requirements so he needed fluids which annoyed him but thankfully his CEWS score were between 0-1 for the day, phew!

We also got him back into routine with his bath and moisturising etc this morning which was great and made us all feel better. His hair is falling out more and more, although when you look at him it’s really only noticeable in one place.

As the day progressed more and more hair seemed to come out and was itchy and irritating but he wouldn’t even contemplate having it cut when the nurse offered to do it!

After an impromptu finger prick blood test which didn’t go down well, he spent the morning grazing on snacks etc which was great after yesterday and he also played his iPad again for the first time in 24 hours! He looked pale though and based on yesterday’s blood results we expected a blood transfusion.
It was a surprise when I saw the blood results to find the following…
HB 109 (well in range again?)
WCC 0.12
Neutrophils 0.07
Lymphocytes 0.02
Platelets 35
Holly was our nurse again today, she predicted yesterday that he would be at zero for neutrophils by Tuesday, looks like she may be right! She also said that they needed more blood to check the HB as it couldn’t be right. It wasn’t! It turned out to be 76 so he will be having a 3 hour blood transfusion this evening.

As the day moved on we realised the time was drawing closer for Dan to return home after his 3 weeks here. The other three children, although cared for brilliantly by their grandparents still need a little normality in their lives, Daddy was going home to give that and on Friday I too will be coming home after almost 4 weeks away. That will be with mixed emotions as it was with Dan today. We’ve made a little routine, a little hideaway in which to deal and cope with everything going on, Dan has to return to the real world now and leave his baby boy behind for a few days. I could see how tricky that was for him as the morning progressed and he gathered his things.

Herbie not only felt like a little bit of drinking and eating but he also decided to make a cardboard racing car from a kit given to him by Sam and Hannah on Friday. He enjoyed putting it together and it was lovely to see him back up and interested.

Herbie kept asking when Grandpa was coming to get Daddy. He wasn’t concerned about anything at that point but getting his new packs of the just released series 10 Moshi ‘s that Papa had purchased for him. When Grandpa arrived it appeared that Herbie inky had Moshi’s on his mind (although he did whisper to me, I’m really going to miss Daddy).
So the time had come, 3 speedy weeks almost done and Dan’s full time stint was over. It was a little emotional but we all hugged and said goodbye quickly so as not to prolong the agony.

Hugs for. Daddy

To distract us from the hole Daddy left we had gifts to open!
First was the new Moshi’s from Papa

Which were a MASSIVE hit!
Then a package from Jo & Dave from their trip to New York & Boston.

Yummy! He especially loved the PEZ dispenser …thanks guys!
I was also lucky enough to have a treat from them in the form of candles. They smell delicious! Cheers guys.

Jo’s thoughtful mum had also sent a gift for Herbie
And it was Moshi themed so a huge hit!
Jo’s mum had also sent me a wonderful gift. Lots of pampering goodies , which were perfect but even more perfect the L’Occitane hand cream which the night shift nurses had been telling me to purchase only last night! Thank you so much Pat!

There was also another lovely card from Auntie Lucy and the crew with some Moshi Tattoos and yummy bits …oh and Herbie smacked the picture of Uncke Joffy’s behind as is tradition!

Herbie spent the afternoon watching TV and generally being quite happy and content but as the night shift came on he began to look tired. The day shift did a temperature and he was still ok but creeping up. By 10pm he was 38.8, he’d managed a good 15-16 hours without a fever. I was sad that he had another but in all honesty not surprised! The Vancomycin that he started and had finger prick levels for this morning, came back low so his dose was increased.

We are currently awaiting his blood to come up to the ward for his transfusion and his temperature to go down now the paracetamol is on board. He’s fast asleep oblivious of the worry he puts us through and tonight my partner in crime is back in the Shire so I’m here alone with cups of tea and the iPad for company!

Dan sent me a picture of a letter we got today saying that Herbie had been nominated for a Well Child award! We were so happy for him to be nominated, how lovely!

So I’m signing off now, clearer mind than yesterday, rain clouds moved on, blue skies taking their place, taking each day as it comes and seeing the bigger picture…a well Herbie and a family reunion!
Day T+11 tomorrow and my mum is coming, yippee! Night all.

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)

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 …

Roller coasters , roundabouts & up and down horses.

T+8 started with a bang at about 2.30am as Herbie spiked a temperature of 38.7 and needed calpol via his Hickman line. Then suddenly another new machine was added

and he was having fluids via his PEG as he hadn’t taken on board enough fluids. Each child has a fluid intake target, Herbie’s is 1.5 litres per day but some of that is made up of the iv’s so we aim for him to drink a litre. This hadn’t really been an issue until yesterday with the sore throat. So he was given 250ml of fluid via the peg whilst he slept. The downside of this was he woke at 3.00am and again at 5am for a wee. At 6am he spiked another temperature and Ella , his nurse for the night, said that the doctors had prescribed another antibiotic to try to knock whatever it was on the head ASAP and that he would need an NPA in the morning and bloods had been taken for cultures already. To add to this disturbed nights sleep around 4am the urgent alarm sounded around the ward and there was a lot of running and raised voices heading into our neighbours room, lights went on in there and I heard the mum yelling. It was horrible, I lay there in the dark , listening to Herbie’s fast breathing and snotty nasal noises and wished this was all a dream and I would wake up at home.

Things settled down quickly next door and sleep resumed. I woke at 7.45am and left Herbie fast asleep. We had Rehka and Lauren again today and Herbie was happy until he heard about the NPA.
We decided to do it before breakfast. Rehka took the ‘you do it for me’ approach with him which did help initially but in the end he just had to be held down again and he wasn’t best pleased. Results take about two days, although they were marked urgent but we will see.

He looked pretty pale and dark around the eyes but he ate his Frosties and drank some milk and juice although no where near the   volumes he had been the last a couple of days. Once bathed he really perked up and we read a book and played with his Moshi figures and I let him open another of Sam and Hannah’s gifts from yesterday. He opened Top Trumps yesterday and today he got two fab books.

 

Thank you Hannah & Sam

Herbie said he felt a little cold after his lunch but he was still chirpy. He didn’t eat much though. He put on his new GOSH hoodie to give it a test run.

But slowly he began to deteriorate. He said he wanted to play Moshi scenes on the bed so we started some but soon he asked to go to sleep.

He slept then for quite a few hours and woke very hot, 39. So more paracetamol and another water bolus down his peg to help his fluid intake. I also tried to get him to drink apple juice. The result was that he vomited all of it up!
A cool bath, a fan and new bedding was required.
The doctor came in and told us that they would give him 24 hours on the antibiotic and take more bloods should he spike again to see if he needed a different antibiotic.
She reassured us that this was nothing to worry about, was to be expected etc etc. I know this, I have been waiting for it for days but it still felt absolutely awful today. Even Herbie commented on how it felt like a different day to all of the others!
He climbed back into bed and snuggled down and that is where he is right now as I type. Sporting an impressive 40 degree temperature, fan on, covers stripped back…it’s going to be a long night!

Today we have missed Lily’s fourth performance with Rock Revolution, she was playing at Witney Music Festival. I hate that we are missing big events in our children’s lives.
Rufus showed us via FaceTime his gap where another baby tooth had dropped out and the school rabbit he had as he was awarded star of the week and put in the achievement book at school.
So proud of our other three and the way they are keeping it together.
It’s hard seeing everyone enjoying a bank holiday weekend, plans for half term, off on holiday etc knowing that not only do you have no such plans but you won’t even be with your family.
So now to the title of today’s blog entry.
A roller coaster ride to get here, almost 3 weeks on the calm and leisurely ride of a roundabout and suddenly the up and down horses!
What will T+9 bring? I want the  roundabout please…I’ve never been a big fan of gut churning fairground/amusement park rides!

Oops almost forgot the blood results.
HB 87 closer to transfusion number now of 80
WCC 0.75
Neutrophils 0.70
Lymphocytes 0.02
Platelets 77 dropped quite a bit but still well out of transfusion target of 20

Sore throats and blocked noses

T+7 had arrived, a week since transplant . We had been advised that T+7-12  was when BMT patients often took a dip. When he woke Herbie said his throat was funny and I immediately thought “here we go” . However with a quick drink he said it was all ok so I put it down to  sleeping with his mouth open. Breakfast was eaten and there were no complaints although I noticed he didn’t finish it all. We had Rehka and Lauren as our nurses again today so Herbie was pleased.

The doctor popped in to check him over. He was less than enthusiastic as it interfered with his TV viewing, especially when the volume needed turning down for her to listen to his chest!

Bev, who works in the BMT doctors office came to the window, as she does most mornings now , with a huge grin and a sign …

We all laughed as she held up a handful of packages.

I love it

The first contained Moshi Mash up cards and a new Moshi t-shirt which immediately had to be worn! He loved it, thanks Auntie Cathy, Uncle James and cousins, Esta, Isaac and Martha.

Also thanks to Kirsty, Lily & George for the above and Marion for the pirate set below.

Alli, who did the boys superhero design, sent me the original plus brill cards, one for each boy.

And Amy and her gang sent a great Legoland postcard and two Lego superhero key rings, one for Herbie and one for Ru x

Dan was missing Mr Oppodopolis so he gathered up the clothes and DogDog and wandered over to the launderette again whilst I waited for Danielle, Friday’s teacher, to arrive. We agreed to meet up for our usual Elevenses as soon as she arrived. The problem was, she didn’t !

Dogdog goes for a spin (and a rinse!)

I sat with Herbie whilst he tucked into his dinner but although he ate nearly all of it he complained about a sore throat. I spoke to Rehka and she gave him oraomorph to help with the pain.
So Dan came back with the clean and dry washing and we were folding it and putting it away ( just like home really) when a volunteer arrived. The ward has volunteers that play with the children whilst parents nip off for a break..

So finally we headed to Starbucks, armed with another gift card sent from Alison and Chris. We decided, as it was 2pm , to go for the works!

We wandered back via Dan’s current home, The Italian Building.

We got back to find Herbie with Danielle! So we went back out on a hunt for series 10 Moshi monsters but the capital appears to be barren ! On our return there was one grumpy boy. He needed more medicine for his mouth and was told he needed to drink a lot more!
Bloods were in
HB 91
WCC 0.83
Neutrophils 0.74
Lymphocytes 0.02
Platelets 134
All still good.
As the day wore on Herbie appeared more tired and said he couldn’t swallow again without it hurting. More meds and he started feeling better.
Sam and Hannah visited for a cup of tea but due to ward restrictions, there is a virus doing the rounds, they couldn’t come onto the ward to see Herb.
They left a few gifts for him. I’m seriously amazed by the generosity!
When I returned I found him still in pain and his tummy hurting!
With glassy eyes and complaining of the cold he climbed into bed and was snoring almost before his head hit the pillow. It’s hard to know what caused it or even whether this is part of the transplant

What T+8 will bring us we don’t know but I hope he’s a little better. Ella , our nurse tonight said he’s doing really well!

Lollies , laughter and superhero plans

T+6 … It’s crazy to think we are almost a week since transplant. Lots of people warned that it would seem long but right now it’s zooming past.

Herbie woke late and a bit dopey but he asked to get up almost immediately. It’s tough as he goes to sleep attached to two iv’s one on each lumen of his Hickman line and wakes up the same! Thankfully he is getting plenty of time during the day without iv now.

With no more complaints if a sore mouth or tummy this morning we were tentatively hopeful for a good day. We were asked if we would chat on camera today about how things were going so far so once Herbie was busy with Helen and Rehka had changed his Hickman line dressing again we headed out to face the camera.

Once done we went to Starbucks for what is fast becoming our ritual elevenses and fresh air break.

On returning we learnt that the Friday consultant round had been shifted to Thursday this week so Catey returned with a radio mic and prepped us ready to film.

Herbie had yet more post today, in fact one of the ward doctors asked me if he had had a good birthday yesterday! He couldn’t believe it when I told him that it wasn’t actually his birthday!
He was thrilled with his gifts from Auntie Charlie’s friend Hazel and her family. Thank you

He was amazed to learn that Deryn and her family read our blog every day and had sent him these goodies. Thank you George and Lauren, he loves what you sent!


His best friends Lily & Sam’s Auntie Emma, Uncle Ollie and cousin Isobel sent a funny card that made him giggle and goodies that made him smile x
Thanks again to everyone xxxx
We have to rotate cards and pictures that are not laminated to avoid dust build up in the room and also so that walls/doors can be wiped down. All things that he has received so far are either on the wall or if they have been on the wall they are now in a scrapbook which will be a wonderful keepsake of the support for Herbie once he is home.

Paul Veys and two other doctors arrived for ward round. He said that really there wasn’t much to add from Tuesday. He wondered if Herbie would beat the ward record of taking 12 days to get to zero for neutrophils and lymphocytes? He said it was all going very well and that Herbie was doing very well in himself.
Herbie appears to go slightly mad when Paul Veys arrives, he still was asking him to “put them up and fight like a man” but he also kept beckoning him to come closer! I was slightly concerned that he might play fight with him!

The blood results arrived late afternoon and showed the trend was continuing…
HB 93
WCC 0.46
Neutrophils 0.40
Lymphocytes 0.03
Platelets 163
Everything is on track, platelets and lymphocytes are still above transfusion levels. Neutrophils and Lymphocytes still heading near to zero.

Herbie has been going on about ice lollies for days! He wanted a FAB or a fruit pastille lolly so when we went to Starbucks we picked up some lollies for the BMT freezer in Fox Ward. Herbs managed two mini fabs and a fruit pastille lolly this afternoon! He was so happy.

FAB

Fruit pastille lolly delight

Then Dan and Herb’s settled down to some serious TV viewing whilst I had a quick walk out to post a letter. Before I left Dan was messing about with the remote controls on the bed whilst Herbie was on it, the laughter was infectious!

I was thrilled to see the letter in my email inbox from the children’s school telling parents about Superhero day, I had received an email about it a while ago and was so touched by the kindness of the teachers & my children can’t wait!

Oh and on my return from my walk I was greeted by this sight which I had to share!

Peas in a pod!

The rest of the day was uneventful but it was lovely to FaceTime the others and hear about Ru’s superhero card from his class and teachers. He was thrilled! I wish I was with them, I miss them so much. It’s been almost a week since I’ve seen Rufus and 11 days since I have seen the girls.

So tomorrow sees us a week past transplant and so far things are going well. It’s harder the longer we are here as we meet so many other parents, many with sad sad stories but also scary ones of transplant complications etc. it can be hard to detach yourselves from them and to remember that each child is different. Yesterday there was lots going on on the ward and all we knew was someone was very ill. We talked to that child’s mother in the kitchen today and the child is a year post transplant and is in due to complications. It really changes your mood and you need to remind yourself of what the BMT CNS Nikki said last week, every good day is one less bad one.

See you all tomorrow…T+7, can’t quite believe it!

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