Category Archives: Hospital school

Rockets, sparklers and miles of smiles…

T+176

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

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

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

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

image

 

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

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

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

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

image

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

imageimageimage

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

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

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

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

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

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

image

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

image

 

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

imageimageimageimage

 

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

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

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

 

Bloods…

HB 15

WCC 9.12

Platelets 166

Neutrophils 8.30

lymphocytes 0.18

 

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

Advertisements

Questions, questions, questions… And the answers?

T+143 : First immunology appointment post transplant

So as those who have been reading know today was the day we officially transferred back to immunology and Dr Waseem. It was also the day that we hoped for some good news about meds, weaning and progress. I know , I know …you are probably reading and thinking why did she build her hopes up, why did she put so much pressure on the appointment. Well I can’t answer your questions but I can tell you the answers that I got for mine…

We arrived in a rainy London in time and headed straight to the hospital in good spirits.
The waiting room in Safari Outpatients was almost empty! This was a complete contrast to to the heaving masses there 4 weeks ago! The bad news was that I overheard the people behind the desk saying that they couldn’t find any of the doctors that were supposed to be there!
We met Hiral from the BBC crew and had a catch up and then the smiley baby Jack with his lovely mum and dad came in too.

Herbie went into be weighed with Joyce, the HCA, and he was very amusing. Joyce is always funny with him and today was no exception. His weight continues to rise (driven by steroids) and he’s also grown in height! His blood pressure was coming in stupidly high with the electric pump but after I reminded her that he needed a manual BP machine for a more accurate result and so she got one and his BP came down to a totally normal rate!

Waseem called us in and finally I got to ask my questions!
He was pleased with how he looked and his previous bloods. He explained that his counts are looking really good and that he is still 100% engrafted. I asked if we could still plan for him to return to school in January and he said definitely, maybe even sooner! This was music to my ears.
We discussed meds. I raised my concerns about the long term use of Amikacin and he agreed and decided we would stop it as of today! Just like that, one iv down! Whoop whoop! I pushed my luck…how about the other one? Would we still need iv’s by Christmas Day ?
Waseem explained that they needed another CT scan to check the lungs and a scan of the liver/spleen to check for fungal lesions. He would arrange for December and if all good he would stop Micafungin before Christmas.
Prednisolone is to be gradually weaned again, MMF weaned from November. Ciclosporin is a little way off yet but that’s fine.
Waseem also explained that they are still investigating our genetics and trying to work out what happened with Lily. Dan had to give more blood for their studies. Whilst we waited there for Dan , Helen, Herbie’s teacher in GOSH, popped by. He was thrilled to see her.
Then we left and headed back to Robin Ward for the first time since we left in July.

It was odd going back there after all of these weeks. We spent almost ten weeks there, calling it home. In the grand scheme of transplant we were one of the lucky ones, some dear friends are still there getting over daily hurdles, some came home without their babies.
Seeing the familiar faces was lovely, David let us in, Maria met us at the door of Robin Ward and then Amy, Lucinda, Maxine, Rose & Rosie appeared. All were full of hugs and smiles and were happy to see us. Maxine got her phone and called Rehka as it was her day off and Herbie chatted merrily to her. It was lovely to see his smiling face light up at seeing them all and hearing Rehka’s voice x

Herb on the phone to Rehka and with Amy.
Herb on the phone to Rehka and with Amy.

So we left London and headed home, knowing we were starting the next plan and returning in four weeks to discover our next move xxx
Remember , remember the 5th of November, gun powder, appointments and what?

Happy Mothers Day, Happy Birthday and WOW WOW, unbelieveable!

T+128

I have so much to write about that I’m not sure where to begin? So in the wise words of the King in Alice in Wonderland I’ll ” begin at the beginning and go on until I come to the end.”

Last Sunday Dan left for Wembley accompanied by my sister Charlie, my brother in law Joffy, Dan’s sister Lucy and our sister in law Wend and their solitary cheerleader , my brother in law, Mat. They were heading to the Sure Run to the Beat 2014 where they completed a 10k run. They managed to raise over £6,000 in sponsorship for Great Ormond Street Hospital Charity which was amazing.

Herbie's Dream Team
Herbie’s Dream Team

With that success in the bag the week continued in a positive mode. Monday was Herbie’s IVIG infusion day which meant an 8.30am appointment at the JR in Daycare. The traffic was bad and we arrived almost 25 minutes late but the nurses reassured us that it wasn’t a problem. Herbie also needed bloods taken for his weekly blood levels, ciclosporin levels, amikacin levels and, this week only, he needed the first of his line cultures to check for a line infection.
Although we had arrived at 9am by 10am nothing had happened. As 11am approached a student nurse popped in to do a set of obs. I pointed out that we had another appointment with community nurses at home at 2.30pm (IVIG takes about 3 hours to infuse). Although the nurses smiled sweetly nothing seemed to happen! Herbie was beginning to get rather fed up and so was I , finally at 12.50pm the bloods were taken! Nearly 4 hours after we arrived! The Gammaplex went up. It has to be given over 3 hours with the rate increasing over time if tolerated. Herbie sometimes gets back pain and despite Piriton he got it this time.the gammaplex kept getting air in the line as it was so frothy and so the alarms kept going off and it took ages!
image
We finally left the JR at 4.45pm and were home for 5.30pm , after battling Oxford’s rush hour, and greeted by the community nurse Sarah who was setting up his iv’s!
image

Herbie has remained fever free since my last entry and this means that we are now 18 days at home. Doesn’t sound much but the amazing fact is that that is the longest time spent at home since transplant!

Back in January of this year Herbie turned 5. He was in the JR and had a blood transfusion on that day. He had wanted a new green maxi micro scooter but we didn’t get one for his birthday as he was so unwell. Finally, at the grand old age of 5 years and 8 months Herbie was able to finally take ownership of a brand new, green, scooter! Happy belated birthday to my gorgeous boy. He loved scooting around the village on it!

Happy birthday (+8 months!) Herbalicious
Happy birthday (+8 months!) Herbalicious

First scoot on the new wheels
First scoot on the new wheels

However, as always he overdid it and got ‘tummy ache’ resulting in an hour of lethargy.
When Victoria, his outreach teacher, arrived he was not very responsive which was sad.
Herbie wasn’t the only one to have a late celebration. I finally got to use my Mother’s Day 2013 (no that isn’t a typo) voucher on Thursday and had a wonderful hour of pampering at The Junction in Witney. Happy Mother’s Day 2013 to me! I really needed that hour, it was a great recharge for my running on empty batteries!

As I type I can confirm that so far the line cultures are still negative for infection. Based on the fact that fevers have stopped that is hardly a surprise. The GVHD has resolved leaving his skin a tad blotchy (nothing new there!) and a little dry but nothing extra moisturising won’t cure. He is meeting fluid targets and thankfully hasn’t had an over night water bolus for weeks and no over night feed since his time in GOS. His meds remain unchanged but his bloods are looking much better again which we hope means that we are no longer derailed and are back on schedule.

HB 12.2
WCC 5.93
Neutrophils 5.16
Lymphocytes 0.30
Platelets 220

His HB and Platelets are fab, no transfusions for months, neutrophils & WCC back in normal range and lymphocytes coming back up nicely. Fingers crossed these improvements continue. Next bloods are Monday.

Herbie is enjoying the return of his outreach teaching. One hour a day again but this term he’s got a job share which is nice for him. New faces are always welcomed when you are home most of the time with restricted visitors. This week ,in keeping with his school theme, we made some soup. It was yummy!
imageimageimage

Dan and I are tentatively thinking ahead. It’s still very early days to make plans but we have so many lovely treats awaiting us courtesy of lovely friends and family that we finally feel we could think about using. Tea and cake at Huffkins, meals at The Fishes, The Chequers Smokehouse (a recent addition from my lovely work colleagues), afternoon tea at The Randolph and a meal at Cafe Rouge. Hopefully fun times ahead at last!

Friday was the eagerly anticipated Kate Bush gig. As previously blogged a wonderfully generous member of my family had offered us tickets way back in the year and it’s been pulling me through transplant ever since. Last week it transpired that only one of us would be able to make it after all as Sam’s name was printed on the tickets and photo id was required. Obviously we were disappointed but Dan, knowing that I have been a fan since she appeared in the seventies said I needed to go. Sam had done all he could via phone calls etc to try to get around the restrictions but had hit a brick wall.
Dan decided to come with me but go to the cinema whilst I went with Sam to see Kate! Traffic was awful and we arrived late to meet Sam who had been waiting outside the venue for at least 45 minutes! He asked us to try to get in together although signs everywhere screamed at us to get the photo Id ready. As expected the guy on the door said no entry without ID and we explained that we were with the ticket owner. Sam showed his ID and we were in! Sam didn’t get to see her in the end and I was totally overwhelmed by his generosity and thoughtfulness xxx We had an amazing night, The nineth wave was amazing and we were treated to a night that overloaded our senses, made me laugh and (for the first time ever) made me cry ( Running up that hill just transports me back to transplant now). All I can say is WOW WOW WOW WOW…UNBELIEVEABLE!

So I end this blog entry , 128 days post transplant, in a very positive place and feeling like I am on the edge of the diving board, about to plunge into the next pool. Hopefully this one is full of warm, crystal blue water and we can wallow there for a while.

image

Taking the scenic route

Herbie had been really on top form since his last hospital stay and we honestly felt the best since transplant. Energy levels were great, eating well, drinking his target of 1600ml without problem and temperature staying below 36.5. We discussed regularly in the evening how things seemed on track at last.
T+108 came and I was greeted at 7.30am by a smiley boy, already dressed and on top form. I remarked to Dan how good it felt seeing him back to his old self every morning. Dan gave the 8am meds and headed off for a run. He has the 2014 Run to the Beat 10k for Great Ormond Street this month.
As soon as he had left Herbie complained of tummy ache. Now he does take lots of meds at 8am, 8 different ones, so occasionally he moans about tummy ache. I gave it half and hour but by then he was holding his tummy and quite upset. I took his temperature, 36.4, perfect, so gave him calpol for his tummy.
Dan returned from his run to find a little boy doubled up on the sofa, wincing saying “it really hurts, that calpol is rubbish”
I took his temperature, 37.5 suddenly…it felt like a rerun of the last time we were admitted. His temperature hit 38 and that, as we all know, automatically starts the admission and TAZ protocol (AGAIN) for a line infection. That means 48 hours in hospital even though I think everybody knew it wasn’t a line infection!

The timing of this admission was dreadful, the following day the twins were due to start secondary school, I still hadn’t managed to get shoes or trainers that would fit Kitty and Rufus started back a day later so we needed someone to look after him if we were in hospital.
There were many tears shed as I said we needed to contact GOS. However Herb just said “can I take Dogdog and my pillow please’
I was sad in one way that he’s resigned to going back in but happy in another that he wasn’t kicking up a fuss.

He slept on the hospital bed as soon as we arrived. He was very hot but once cultures were taken from his line he was given calpol. However he threw up and it was decided he needed it iv to ensure the temperature came down. His skin was getting very blotchy and Dan and I realised quite quickly that this was probably GVHD again. Our worry was that it was also in the gut.
The JR consulted with GOS and an ultrasound was ordered to see what was going on in there.
I had to leave to get back home to sort out the girls ready for Secondary school. Dan took him off for ultrasound, he was laid out on his bed, hot and asleep. I felt awful leaving but the girls needed me.

That evening Dan reported that the paracetamol had kicked in and Herbie was bright and cool and happy. The ultra sound was ‘unremarkable’ and nothing was a worry to the doctors. This was great news but it was agreed by all that this was GVHD rearing it’s ugly head again. This is annoying as Herb is in the lowest category to get it really, sibling matched donor, 10/10 match, same blood group so no changing of blood group, same gender donor!

Still, it was a relief that the ultrasound looked good and they upped the steroid again(we had just weaned that too!) to counteract the GVHD.
Once the temperature was gone he was ‘old Herb’ just a little blotchier!
image
Still blowing raspberries at the doctors (and some poor nurses!) but always happy to see the ward play specialists Grace & Sam and Juliet the hospital school teacher!
image
image
By the evening it was decided, in consultation with GOS, that if temps stayed away, culture were negative and GVHD under control he could stop the TAZ in the morning and could go home on Wednesday.

Day T+110
Wednesday arrived, the three others were all packed off to school sporting new uniforms and with much excitement and I headed to the JR again.
image
I swapped with Dan, who went straight off to do some work, and arrived in Room 25 (yes we are in that room again!) to find it full of doctors! Herbie was holding court! The doctor in charge said that the iv’s were to continue, which was not what we had thought was happening, and that we MIGHT go home today! Grrrrrrrrrrr
They also wanted a repeat ciclosporin level as it was only 50 on Monday and it should be between 100-150. Ciclosporin is one of the immune suppressants and if levels go too low it can cause GVHD. However the level was taken almost 24 hours after the last dose given which is probably why it was low! Annoyingly though they only told us they needed a level at 10am, so his 8am dose had been given! This meant staying until 6pm.

Luckily Juliet came twice to do science and maths with him which he loved and she commented on how well he had come on with his reading etc since January.

Working with Juliet
Working with Juliet

Herbie continues to be blotchy but thankfully it isn’t getting worse or too itchy. It’s not pleasant to look at but he’s in great spirits. More importantly…he’s upstairs asleep in his own bed! Yes we are finally home again. Now I’m not a gambling person but anyone placing bets on when the next stop at the local might be? Herbie is just like his dad, never takes the motorway when he can take the longer, windier and more complicated ‘scenic route’

Bloods
HB 11.5
Platelets 75 (annoyingly they drop with fevers)
WBC 3.5
Neutrophils 3.29
Lymphocytes 0.11 (dropped quite low again!)

GVHD
GVHD

image

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…

image

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.
image

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.
image
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.

image

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!
image

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!
image

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!)
image
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!
image

HOM HOM HOM

T+55

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

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

Amy, the play worker on Robin & Herbie
Amy, the play worker on Robin & Herbie

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

Sufi and Herbie
Sufi and Herbie

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

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

image

image

image

Herbie asked lots of nurses for photos

Sandra says goodbye to Herb
Sandra says goodbye to Herb

Sandra obliged but Herbie and Lucinda had a scrap!
image

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

HB 105
WCC 13.20
Neutrophils 10.41
Lymphocytes 1.56
Platelets 163

CRP 33 ( ????)

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

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

HOM HOM HOM HOM

HO HO HO …it’s drawing nearer

T+54

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

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

Rehka and Herbie
Rehka and Herbie

They had a real giggle today.
image

Dan left to go home briefly and watch the girls play leaving Herbie to enjoy his post!

Thanks Lily & Sam for the brill books and room decoration
Thanks Lily & Sam for the brill books and room decoration
Thank you Harry!
Thank you Harry!
Thanks Donna and Richard.
Thanks Donna and Richard.
Thanks Rachel, Ade, Sid and Archie.
Thanks Rachel, Ade, Sid and Archie.

He doesn’t have one, he loves the Mixel and it’s all brill (including Dan and I’s treat.)

Thanks Jo, Richard, Elsie, Meg and Seren!
Thanks Jo, Richard, Elsie, Meg and Seren!
News from Floss!
News from Floss!

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

image
Herbie was quite sad about the possibility of not seeing Helen again and promised to look for her when he comes back for clinic.

The bloods were in
HB 103
WCC 12.12
Neutrophils 9.85
Lymphocytes 1.45
Platelets 160

Kidney and Liver functions improving daily.

There was the obligatory walk to the vending machine to purchase steroid hunger foods.
image

There was also some superhero action.
image
image

Sarah , one of the HCAs , looked after him tonight. She also looked after Lily this time last year!
image

After our late night Skatoony episodes Herbie escaped onto the ward! He was hilarious and loud!
image
image
But ended up with tummy ache again from running about!

A full tummy and over 2000mls of fluid drunk meant he felt asleep immediately.
I did his 11pm meds and now I must sleep! One of the nurses, Emma, went on holiday today, she left him this note!
image

Tomorrow is another day closer …
HO! HO! HO!
I just can’t say it! Fingers crossed xxxx