Mind the gaps…or shall I fill them?

It’s been 2.5 years since Herbie’s BMT and a very long time since I felt the need to update here. However I have recently been asked by two people why I no longer blog and so I popped by to see what I had missed. I had missed messages ( apologies) and I realised how much had happened in the time that I had been MIA. So as 2016 draws to a close I find myself reminiscing about Christmas 2014 and how far we have come … let me fill you in!

I left the blog just after the BBC documentary aired in 2015. It was a strange time for us as so many people were interested in our story and it all felt a bit surreal. The flip side was that Herbie continued to lose weight and a question mark hung over him. What was going on? Waseem was tentatively suggesting investigations to rule out gut GVHD and we had really hoped to avoid these. Herbie wasn’t interested in eating much but he was still full of energy and enthusiasm for life. He returned full time to school in September 2015 and I tentatively returned part time to teaching. 

By Christmas he was still losing weight,  albeit slowly, but he was gaining height and we finally stopped the ciclosporin which seemed like a huge milestone. The Peg and Hickman were still in situ as we embarked on 2016 but there was talk of changing to a button whilst an endoscopy took place to work out why he was losing weight. 

Herbie enjoyed his 7th birthday and as always we thought back to 2014 when he spent his birthday in hospital and felt so grateful! The year moved forward and we continued to go to the JR every 3 weeks for IVIG therapy ( immunoglobulin replacement) and to GOSH for appointments every 3 months. 

Finally Dr Waseem said ‘enough is enough’ as despite being on Ensure build up drinks 3 times a day Herbie was not gaining any weight and that just wasn’t right. So in June Herbie was called back to GOSH for his first overnighter since BMT to undergo two scopes to try to solve his weight loss issues.

This admission, although planned and routine, did stir up many emotions and memories that I had locked away. Dan took him to GOSH and stayed with him whilst I looked after the others at home and tried desperately to retain a sense of normality. Of course inside my head it was far from it! 

Thankfully nothing much was found but as there was a significant drop in lung function and a small patch that could have been GVHD in his gut he was given a new , much larger steroid dose!  20mg twice a day ( a big jump from 3mg once a day!) 

The idea being that there may well be some immune responses that needed dampening down that were causing the weight loss and the lung issues. 

It didn’t take long before the ‘crisp monster ‘ reared its ugly head and Herbie was once again obsessed with (and crazy about)  food and eating! The weight started to go up after 12 months of going down! By the next appointment with Waseem his lung function was back to normal too! 

However it wasn’t all straight forward…

When Herbie had his PEG inserted in 2014 we took part in a study. There were two different ways used to insert the PEG and we didn’t know which we would have. When Herb had a CT to look at his stomach and lungs for signs of GVHD what they found was not what they were looking for! His PEG has slightly pierced the top of his liver when it was inserted and so removing it was not going to be as straightforward as they had hoped and it certainly couldn’t happen as scheduled ( alongside endoscopy). This was an annoyance and so Herbie returned home from GOSH still sporting the original ( and now quite manky looking ) PEG. 

In September 2016 we were asked by GOSH publicity if we could attend a fundraiser that was taking place nearby. Herb was to ‘make an appearance ‘ and I was asked to say a few words. It was really quite emotional standing in front of all of those people and once again a packet of tissues came in handy! ( and a pair of sunglasses!) 

The steroids carried on doing their job and we enjoyed another fab summer. We started weaning back down as Waseem didn’t want to undo the good work of the Pamidronate infusions to help strengthen his bones. These had stopped earlier in the year after the DEXA scan showed he was back within normal range for bone denisity.  During the last week of the summer holidays we went away for a couple of days to Wales but one day Herbie was very sick and had a blinding headache. It was a shock as he had been so well all year. On our return the same thing happened but on the first day of term meaning that he missed his first couple of days of Year 3/2016-17. 

It soon appeared that the stomach bug was not the problem, Herbie was experiencing nasty headaches, with migraine-esque symptoms. He would often wake with with a headache and fuzzy eyes and feeling sick. He missed more days in term 1 2016 than  he missed in the whole academic year of 2015-16. We told ourselves that it was the drop in steroids and for a while we convinced ourselves but it’s hard to convince yourself the longer it goes on. We called GOSH. 

Waseem was thinking it was a medical reaction but thankfully wasn’t unduly worried! 

On our last visit to GOSH this year Herbie had one of theses headaches start whilst we were there. It was horrible for us but as usual our little trooper took it in his stride asking his consultant to ‘turn those bright lights out as they hurt my head’ and taking himself off to lie down on the bed in the consulting room! 

I dashed to the chemist on Southampton Row for calpol rather than wait for GOSH pharmacy to dispense it and within half an hour he was right as rain and eating sandwiches and dancing around in the park! Waseem , rightly, said these needed further investigation and suggested he would ask Oxford to organise a brain scan.

I don’t know about you but those two short words , brain scan, just fill me with dread. He’s had these scans before , when he had meningitis back in 2010, and I had that same sense of dread. What will they find? 

Back home we tried to carry on and put the request into perspective. There didn’t appear to be a rush on GOSH’s part so we decided it couldn’t be more than precautionary. Well we said that to one another and to friends and family but inside , once again, was a very different story!  Then a call from Oxford’s ID team increased the anxiety… they had a request from GOSH and felt he needed the scan asap. It appeared that the fact he woke with these headaches was a concern. I did my best to explain that it was only a handful of times and that he had been almost 3 weeks without one before the GOSH appointment. The Dr said we needed to come in  the following week. We wrote it on the calendar but we didn’t need to , from that moment it was all we could think of! 

 Suddenly Dan and I lost faith and started allowing ourselves to believe that the worst was inevitable. On the day of the scan we headed to Oxford and tried to be upbeat but we certainly weren’t fooling each other! 

The scan took place in Oxford in November 2016. We were told to expect results in 24 hours. I went back to work to keep busy , it didn’t really stop me thinking about it. 

The familiar train ringtone rang out from my phone , a signal that Dan had text me… 

It’s all fine, nothing there. Can’t bloody believe it! 

I read the words twice and then allowed them to sink in. I danced and jumped around ( I think my class thought I was having a party 😂) 

Relief… wow what a feeling as the worry and stress recedes. It was all good, probably a medicine reaction again . I wanted to laugh, cry and yell and hug everyone in sight. 

So we headed to the end of 2016 feeling positive. The other news was that the IVIG infusions were scheduled to go back to subcut at home meaning an end to the day in hospital every 3 weeks. This also meant that from January 2017 we could think about Hickman Line removal. Lumens , Hickey & Kenickey have been part of Herbie’s body since he was 5, he turns 8 next week! I had refresher training and we were up and running with weekly subcut infusions again.

Life looked to be back on track again. 

On December 10th Herbie came to find me in the morning looking worried. “The lumps on my neck are back ” he said. I thought he was going to cry. I looked carefully and found a solitary blister behind his ear…looking suspiciously like chicken pox 

It was the morning of the twins birthday celebrations and a Saturday. I tried to contact all of Herbie’s care providers but to no avail, a trip to A & E was looking likely. I finally got through to a dr in GOSH and he said we needed Aciclovir again and to go to the JR. By the next day it was spreading and looking for like shingles. 

Thankfully it looks much worse than it was as he experienced no pain just itching. It did mean he missed the last week of school and Christmas dinner at school AGAIN! 

So the gaps are filled. We start 2017 optimistic… we will celebrate 3 years since transplant this May. On Thursday Herbie turns 8. Life isn’t normal but it’s getting there x

Do we know those people?

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I find it quite bizarre that it’s been almost 500 days since Rufus donated his cells to Herb. I guess that watching it again on the television made it feel like yesterday. Things have been ticking along nicely since school ended for summer and we are all determined to make the most of the holidays whatever the weather.

On Wednesday last week we had a check up appointment at GOSH. This was our first appointment since the programme aired and was the day after episode 2 was transmitted. To be honest we joked on the way to London about Herb being a celebrity but I don’t think we had any idea what things would be like when we arrived!

First of all we were greeted by a large poster of myself and Herbie at the entrance to the hospital! Although we knew it was there (as a friend had sent us a picture)  it was still surreal to see it!

 

Herb, cheeky as ever, suggested he should cover my face as he’d done most of the hard work in transplant! Finally he agreed to pose with me too!  As we left the entrance we were greeted by numerous people (none of which we knew) who told us that they had watched the programme and which bits they had enjoyed and also how great it was to see Herbie looking so well. Herb enjoyed a few high fives with strangers and seemed to love the limelight.

Once in Safari Outpatients we were greeted by Louise on reception who asked Herb for his autograph, she was also in the programme so we asked for hers too! 😂 We also bumped into some BMT friends and Herb enjoyed some table football and iPad time with Ryan (who celebrated a year since his transplant this week.

One strange thing about going through transplant is that you meet lots of BMT parents and you see their children through the windows of the rooms as you walk through the wards (especially in Robin Ward as you go into Fox Ward daily too to the BMT kitchen and milk room) and you hear daily updates about them from their mums and dads but the children don’t ever meet as they are isolated from each other! I used to tell Herbie about the other children every day. He would often ask how Jacob, & Seren were or whether Mason was having a bath when I went to get our bedsheets or if I knew which game Sebastien was playing on his console. He would ask Helen, his teacher, w hat Milan was learning with her and ask me if he was building Lego. This curiosity about others who have had or are having BMTs continues. I often update him on his BMT buddies, he knows Jacob is starting Secondary school in September, that Seren is doing well  and that Sebastien lost weight like him and needed supplements. He feels sad for baby Jack (as Herb calls him)  when I say he’s back in GOsh. He’s cried about Mason and more recently over Milan and he’s shown a little bit of the green eyed monster when he learnt that Ryan had had his lines removed. It’s a strange thing being part of the BMT family. So for Herb to get to see Ryan and chat was lovely.

As we waited for our turn to see Waseem we saw many of Herb’s BMT consultants (Dr Robert Chiesa and Dr Juliana Silva ) and BMT nurses and they came to chat and say well done on the programme which was lovely. A lovely couple chatted to us, they were there with their young daughter. It seemed that they had watched us in the programme too. They thanked us for doing it and said it had been helpful to them as they were going to transplant too and were, understandably, worried. Dan told them about this blog, I hope they found it and wish them all the luck in the world.

Herb was weighed and had his height (114.8cm)  and BP (105/69) done. His weight had dropped again , 9 weeks ago he weighed 24kg (although it was really 23.6kg without his hoodie but Jinhua let us put the hoodie back on ) , this time he was 23.4kg. The day before we had seen a dietician at home at the request of Waseem.  We discussed what Herbie ate and she plotted his height and weight. Her weight chart showed that he was just shy of the 75th centile and she felt he wouldn’t be able to gain the weight that GOSH wanted him to as boys don’t put much weight on at this age and if he did it wouldn’t be rapidly. She had sent this information to Waseem. He made it clear that he was still worried about the rapid drop in weight and the fact that he was still losing. However, he also decided that there was a risk in doing an endoscopy to check for GVHD & a risk in dropping steroids so we agreed to tentatively drop the steroid and watch carefully. The drop would be from 5mls daily to 4mls for two weeks. If this was tolerated we would drop to 3mls for another two weeks and should that be ok he would hold the steroid at 3ml and begin to wean ciclosporin again. We felt these were sensible steps. The last CD4 count was 80 which is very low for a year post sibling transplant even with steroid and ciclosporin still in place. However Waseem reassured us that these are ‘just numbers’ and that the fact he’s been at school and stayed well etc was a good thing. He felt that his thymus was ‘feeling rather insulted’ by the chemo, micabacterial infection and meds but that it would be ok it just takes time. We do want his CD4 count back up before the winter though to protect him. Bloods were taken to see what was happening with his counts now. Results should come next week. Fingers crossed.

We left outpatients and headed to Safari Daycare to get the bloods done. People smiled at us and we’re very friendly. I saw Keano (also featured in the programme) and his mum in one of the isolation rooms. Professor Persis Amrolia stopped to chat to us about the programme, asking Herb for his autograph and saying he thought it was a good insight. I felt quite pleased that he cited certain things we had said as ‘insightful’. He is such a lovely man.

Then it was time to head to Robin Ward in the hope of seeing a few familiar faces. Herbie was very hopeful that Rehka, Amy or Ella would be there and he would have loved to have seen Maxine or Lucinda or Holly or any of his regular nurses/HCAs. We chatted to Nikki and then the nurses working popped out to see him, familiar faces and all so happy to see him. Sadly Rehka had worked the night shift and no Amy or Ella but he enjoyed catching up.

I also got to catch up with Sharon, Zak’s mum. She is currently in Fox Ward with Zak as he is having his BMT (10 days post transplant as I type) . Herb got fed up of the adult chat though and left the ward and ran to the lifts! So it was hop back to The Lagoon and then home.

So the steroids are currently dropped to 4mg daily and we are watching carefully. Herbie is enjoying the start of the long summer break. We created Summer’s Bucket List. A list of things we all wanted to do before summer left. It’s been such fun so far, after the last two summers off illness and hospital admissions we have everything crossed that 2015 might be better…it’s starting well! I’ll leave you with some of the things we’ve done so far and a quote.

” Aah, summer – that long anticipated stretch of lazy, lingering days, free of responsibility and rife with possibility ”

Lights, camera, action

T+430 I’m sure that those of you that we don’t see regularly are wondering what has been happening in the last month or so. Well in the main it is all very very positive. Herbie continues to attend school and last week he did a record 4 full days and 1 half day. He is still loving being back at school and manages the full days well. I too have returned to school and just like Herbie I am loving being back in the classroom. I have been quite overwhelmed by the wonderful messages and comments from my colleagues, pupils and parents. Despite all of the sadness in the world there are still plenty of wonderful people.

The most exciting thing that has occurred is that the transmission date for the BBC documentary on Great Ormond Street that we were filmed for was confirmed. July 14th, BBC 2 at 9pm.  We have been involved in lots of publicity to help raise awareness of it and of course the need for donors! Herbie can’t quite fathom seeing himself in papers and TV listings magazines! He asked me the other day “why am I in the paper again? Do people like me? ” On the day of transmission we were filled with a mixture of excitement and nerves. We were able to speak to Catey, Hiral and Dollan from the TV crew who were offering us support.

The previous day we had gone to radio Oxford to be interviewed. You can hear it here…  Kat Orman interview. Once that was transmitted on the Tuesday morning the phone, Facebook and Twitter feeds started hotting up! Nothing prepared me for the influx of messages as the programme aired though! WOW, such wonderful feedback from family and friends and strangers to!  Herb definitely did capture the hearts of the viewers , so much so that he was trending on Twitter as #SuperHerb!

I cried at both Teigan and Keano’s stories even though I knew they got through too but all in all I’m so glad we did it! If you missed it it’s on BBC iplayer!

A few people commented that the programme didn’t show how up and down his 9+ weeks in transplant were but the remit of the series was to highlight the decision making.  Most of that happens prior to transplant. I also believe that the programme was sensitive to the days when the children were really unwell. I don’t think it would have made good viewing to watch Herb suffering with skin GVHD. Keano was briefly shown in some pain but it was necessary to show the miracle of his turnaround in my opinion. I commend the BBC crew for the sensitive but compelling viewing that they have created and look forward (albeit armed with tissues) to the other episodes.

It has made me quite pensive this week. The programme stirs up a few memories and feelings. I have been thinking of the brave families that we had the privilege to meet during transplant. Wondering how those we are no longer in touch with, who sadly lost their precious children,  are coping. Some we were much closer to and still in touch with we know about. One family are expecting a new baby and we are thrilled for them, another sadly lost their angel after such a long battle and we haven’t stopped thinking of them. Some children are line free and as drug free as they will ever be (all BMT patients stay on one antibiotic for life)  and have fully working immune systems a year on. Others like us aren’t quite there yet. We are all moving forward though.

Herbie continues to be on a plethora of meds. Not much has changed in the last year apart from stopping the daily iv’s. He still has a Hickman Line and his Peg.  His weight has stabilised but Waseem wants him to gain weight so we will be seeing a dietician next week to see if we can supplement his diet at all. He is obsessed with drinking milk and is particularly partial to swigging it from the bottle…no manners at all!

At the JR for his three weekly immunoglobulin iv

School is now out for summer but Herb had a great last few weeks. He visited his new teacher and will return to his full class next year & do full time. He took part in  sports day which he loved but he did end it in tears because he couldn’t win any races.

He also has started getting party invites again and enjoyed a party last week with his buddies.

So with excitement of the documentary still fresh in our minds and a visit to GOSH next week to talk to Waseem we are looking forward to the summer and hoping for a more positive 6 weeks than 2014!

Milestones, obstacles and conundrums

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I must apologise for the lengthy gaps in my blog posts but really I feel the need to write as and when I have enough to tell you.  Our days have ticked by quite happily. Herbie continues to go to school each morning and is managing it well. When he returns home he spends time resting on the sofa , either chatting about his day or playing on his ipad or the X-box. He looks forward to the others returning from school just after 3pm  and can often be found in the playground trying to get back into his classroom whilst we wait for Rufus to come out. We tried since our last GOSH appointment to get him eating again. It’s so difficult as you can’t force someone to eat, you can only really encourage or tempt them. Breakfast was a complete no go about 6 weeks ago but then he started asking for a yogurt. We had a few weeks of yogurts and then he added in Cheerios (sometimes with milk, sometimes without!) . We started sending yogurts and Cheerios to school and also prawn cocktail crisps which he is obsessed with still. Some days his eating habits remind me of a toddler, he fills up and then isn’t hungry the following day. So according to our scales and the scales at the JR his weight appeared to stabilise at 24.4 which is stil 2.2kg  heavier than when he came out of transplant 10 months ago. So we felt quite happy that gut GVHD wasn’t an issue. So I guess the majority of our news this post concerns ‘milestones’. The first was my birthday. Last year I celebrated it at Great Ormond Street in Room 2 on Robin Ward. Herbie had his peg inserted the day before and had to stay overnight.  This year I was home with my lovely family, no impending BMT, surrounded by the people I love.

A week later we were looking forward to a trip to London to see Count Arthur Strong…we never made it though, the night before Herbie’s PEG blocked almost a year after it was inserted. The blockage, caused by a different magnesium tablet that went a little gloopy when dissolved, stayed for 12 hours and it really looked like the end of the PEG was close to hand. Herbie took his 8am meds by mouth and it was a struggle. Seriously the PEG was the best pre BMT choice we made.

Thankfully it did unblock before the 3pm meds but sadly not soon enough to make Count Arthur Strong.

Then the biggest milestone of all arrived…one year since transplant! May 16th 2015, we found ourselves deep in thought about how far we had come and how far we still had to go. A year ago we had no guarantees of celebrating this milestone, no promises of bringing our boy home  just percentages and hopes and dreams. Most of all though we had trust and faith. Trust in the hospital staff that this was the right course of action and worth the risks involved. Faith in our boy to put up the best fight he could, faith in ourselves that we would stay strong and try to keep ourselves as positive as the situation would allow. So where do we find ourselves? We currently have a boy who is still 100% engrafted with Ru’s cells, a boy back at school part time but soon to be full time, a boy who has a future . Yes we still have a Hickman line and a PEG which we thought we would have said goodbye to by now. Yes we are still on ciclosporin , immune supressant, and steroids…as well as a shed load of other meds and sometimes it’s frustrating but we’ve got our boy and for that we are grateful.

We marked the day with balloons, cards and small gifts and Herbie requested custard donuts as a cake although he didn’t actually eat much of one.

The day before the milestone Herbie & I went to my school to judge an art competition on the GOSH fundraising Peter Pan Day. The school raised over £300 for the hospital and the kids and staff looked fab. Herbie adored being a judge and leapt in the air when the final amount raised was announced.

Judging the artwork

Many of you may be wondering , like us, when the TV programme will be shown that Herbie’s story is featured in. As of today , Monday 25th May, I still don’t have a date to share. Be assured that I will let everyone know when it’s on. I’ve done a few phone interviews for the GOSH magazines which will be out in July and they hope they will coincide with the airing of our episode.

At our most recent GOSH appointment Dr Waseem was very happy with his progress and how he looked. However his weight had dropped again and he was still concerned that there may be some mild gut GVHD that we needed to gain control of. GOSH weight was 24kg , still 4kg more than this time last year and 2kg more than when he left GOSH last July.
The great news was that finally, a year down the line, his CD4 count is over 250. It was 350 in fact which was great considering he is still on immunosuppression. The lump on his neck seemed much the same he thought but he felt it was possibly harder which was a good thing. It shows the graft is active and targeting previous damaged areas and collecting dead mica-bacteria. The plan was weigh him at the JR in two weeks and see if we can get him to gain or stay the same weight. He told us to try to feed him. We came out and Herbie said ‘I’m starving!’. So we went to the lagoon where he ate burger and chips!

I’m hungry!

Herbie also made the local paper again! Thankfully it was nothing to do with his BMT. He had  a First Aid Day  at school and he totally tricked me by coming home with a bloody bandage on his leg. Imagine my horror as he limped up the drive with Dan behind him.

Little devil really kept up the pretence too!

I am starting to gear up to return to work soon too. It’s been some time but I’m looking forward to returning. It will be nice to allow time to think about other things.

So as all of our BMT buddies hit their 1st year milestones we all head into the unknown of year 2. For some life has found it’s way back to some normality, for others new challenges have arisen but we are all grateful for being able to be here a year on with our precious children and to still share this journey together.

I’ve always said that we took the scenic route through BMT, we’ve climbed hills, we’ve crossed bridges and we’ve travelled through dark tunnels but right now we seem to be on a pretty even , albeit it winding, coastal road, the wind blowing through our hair, a sense of excitement that we are so close to good things that we can smell it!  So near to our destination as the crow flies, but you know us, that would be dull right? Do you know what, right now dull sounds quite appealing!

Egg-sacally what has been going on?

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Wow! Look at that number above. It’s shocking how close we are to a year post transplant and that I’m still writing this blog!

Since the last update we have had a few issues to deal with. I blogged previously about the tummy upset and recovery but you  may recall my last comment (in parentheses ). Well we headed to Easter optimistic of a healthy and happy time but those of you that have followed this journey from the start will know that our boy isn’t keen on the direct route (like his father) and prefers a scenic , often longer and more winding one!

So basically the upset tummy continued with very little desire to eat and intermittent tummy pain with some sickness. No real pattern, no fever and no other symptoms to get a grip on.  I began to worry that a GVHD diagnosis was likely. Herbie was losing weight too. This was a double edged sword. He’s clearly been over weight for a while due to steroid induced munching but as the steroids halved his constant hunger diminished and his weight dropped. When he started the BMT last May he was around 18 kg, he has been as high as 27kg. This effects his blood pressure (he’s still on amlodipine daily to reduce his BP)  and his fitness levels.

The first week of Easter break started and involved a lot of chocolate. The other three munched their way merrily through tons of the stuff but Herbie still has his in his room untouched. We had the family Easter egg hunt at Dan’s parents house , Herbie dressed as a sheep to collect his eggs ( why not?) and managed to collect a lot.  He smelt the pizza and cakes that were put out for the tea party  but was not able to eat anything bar a sausage roll. He had fun though and was full of energy and loved seeing his cousins as always.

The Easter egg hunt bags

Before Herbie & Lily were initially ill with their mycobacterial infections we spent lots of weekends walking in and exploring the woods around where we live. With Lily initially not being able to walk far and then Herbie it’s been some time since we have visited our favourite haunts.  Dan decided to take the girls and Rufus for a walk in the Wychwood Forest.  Immediately there was protest from Herbie! He was absolutely sure that he wanted to go and he was so enthusiastic that how could we say no?  It was decided that we would all go and that Herbie could walk a little bit and then we would sit in the car (Lily too if she wanted to) until the others got back.

When we arrived at the gate where we would start our walk I suddenly remembered that it was quite an uphill  walk to get to  our favourite spot and that day it was particularly muddy so I knew it would be  tough going.

We set off with lots of chatter and excitement but after a few minutes Herbie started to huff and puff and I realised that we would be back in the car sooner than I had anticipated!

I was so wrong! That boy has such stamina and determination. Yes he got tired, yes he walked slowly and yes it was tough going but he did it and we made it to the flatter part of the walk (with photo opportunities on the way!)

 

He did need to sit for a bit to catch his breath and have a drink. Then we walked on to the rope swing clearing.

 

Once there  he even got to have  a little swing! We had such a lovely time! Dan had to give him a piggy back  to go back to the car but he did brilliantly. He was absolutely shattered when we got home but we definitely caught a glimpse of our pre transplant life.

Although these positive things were happening Herbie still wasn’t eating much and continued to have diahorrea and we spent most evenings wondering what was going on.  On the first two weekdays in the Easter break Herbie had his gammaplex and Pamidronate infusions for his immunoglobulin therapy and bone density.  These infusions through his Hickman line take hours and end up taking most of the day.  Despite an early start at the JR It was almost two hours before the infusion started and when the boys (Dan & Herb) returned home they were tired and grumpy.  On a positive note though Dan bumped into Dr Kelly , who we haven’t seen for a while,  and he came to see Herbie on Day Care and chatted to Dan.  He’s such a caring doctor. Herbie’s weight was down again but so was his BP which was great.

The rest of the week was relaxed and Herbie seemed to be vomiting less but the pain in his tummy was requiring calpol at least once a day and he was waking to go the loo during the night even more frequently. The week ended with much excitement as the GOSH publicity department announced on their website that the third series of Great Ormond Street would kick off on April 28th at 9pm on BBC 2! So exciting as Herbie features in episode 1.  The excitement was short lived though as within days the schedulers changed the air date .

Then on Wednesday we headed to London to see Waseem with Herb and Lily after a particularly bad night with Herb who was up loads in the night with tummy pain. On arrival in London he promptly threw up in the car park and announced he felt better! We headed to GOSH feeling slightly anxious.

Waseem was joined by one of our BMT nurses Hayley. It was so lovely to see her. She was one of the loveliest nurses , always willing to listen and take time with us during night shifts.

Waseem seemed pleased with Lily’s progress and agreed to temporarily stop her immunoglobulin replacement therapy during the summer with a view to restarting in Autumn.  He showed Lily her recent CT scan images and explained them to us. Her lungs are still very abnormal but there was some improvement.  As her lung function continues to improve he is reluctant to stop any of the other meds as she still has cavities in her lungs which bugs would love. We discussed Herb and everything that had happened since our last visit, including the small lymph that was up just where he had it drained last year. It was decided to leave meds as they were right now.  Waseem said it was difficult to tease out whether the symptoms were gut GVHD or down to immune reconstitution  and the burden of micabacterial infection remnants. He didn’t seem overly concerned apart from the weight loss as he now weighed 25.9kg.  It was agreed to monitor and if there was no improvement in two weeks or more weight loss he may need to organise an endoscopy to rule out or confirm GVHD.  He explained that he didn’t want to increase the steroid (the usual GVHD treatment) because of bone density issues and also it suppresses the immune reconstitution again.

We headed to the outpatients ward on Safari for Lily to have bloods and bumped into Amy, another of his BMT nurses, and had a lovely catch up. Again, she was soo lovely during transplant & she also nursed Lily in Robin back in 2013.

Before we left we met with Cassandra and Rachel from the GOSH publicity team and Ash the photographer. We had publicity shots done and chatted to them all. Three lovely people who even got the kids a gift bless them! The whole programme thing is becoming more real!

We left feeling  hopeful that Herb’s tummy thing was an immune issue and would resolve itself. That was the last time to date that Herb vomited and  although the tummy pain seemed to increase over a couple of days and the restless nights too, suddenly, just as quickly as it started , it just stopped. Last week Herb announced on Wednesday (a week after the appointment) that he wanted breakfast for the first time in about 4 weeks. He’s now eating and drinking more, no diahorrea  and his energy levels are up and no calpol has been needed for almost a week. We are beginning to think Waseem’s hunch about immune reconstitution was correct. (thankfully!) On Friday his teacher met me to say ‘she thought he was in fine form!’

As I type this we are heading into a new week and one that will bring back a few memories. I will blog about that nearer the time.  However one milestone, other than 11 months post transplant, which we hit this week was the anniversary of the Rays of Sunshine wish from last year . Some of you will remember he had a wooden ‘treehouse ‘ .

Here he is on it a year ago pre transplant…

 

and yesterday, 11 months post transplant

 

He he still has some way to go to get his hair back to the longer length but he’s on his way. This milestone really made me stop and take stock of how far we have come.  In many ways this year has gone by in a blink of an eye. I was thinking of two people as I wrote this…

Angela D, who may not even read this, but who was my BMT  lifeline this time last year. She had been there, done it and got the t shirt and her words often consoled me on days when my brain struggled to process all of the BMT info being thrown at me. She once said to me

” I know exactly how you feel…everything runs smoothly then all of a sudden something sends you on a different path. It’s not easy but remember other children have experienced this before. Put your trust in the doctors”

I have always done that, I have always trusted them and will continue to do so.  Thank you Angela for your friendship (and happy birthday!)

.The second person is Sharon. Her son and daughter both need a BMT and she will be heading to GOSH with her son in June to start. She is in the same place that I was last year but I want her to take comfort that Angela was right, Herbie & I  have  experienced what her and Zak will and next year Sharon you will be wondering how you can already be close to celebrating a year post transplant. Stay strong people.

Finally, what a lovely Easter surprise Herb had in the post from the  lovely Hope. A card , letter and gift! Thank you Hope. Herb says he hopes you had lots of chocolate at Easter and he loved hearing from you again!

So time to sleep. I have no doubt tomorrow will be full of yogurt, chocolate milk, prawn cocktail crisps and Skylanders after school for Herbie as usual!  He’s getting there,  now if I could just get him to eat his flipping Easter chocolate it might stop calling to me from his room!

 

Oh and another thing…

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So it appears that my posts are like buses! You wait for ages and then two in one week! I realised that I missed out a few things in the last blog that I had wanted to talk about and also an update on Herbie is probably a good idea too. On Thursday I woke to a small face staring down at me  and a voice saying  “I want to go back to school, I feel better now.” We had agreed he wouldn’t go back despite him feeling back to normal but he was having none of it. Dressed for school and insistent how could we say no?  So normal service resumed. I went to the supermarket to get a few things and suddenly felt quite anxious that I was unable to get a signal on my phone. What if the school needed me? What if he got unwell? What if? I needn’t have worried. When I arrived at school at 11.55am he was there, beaming and full of beans. I had a full dissection of his morning and as he sat on the sofa drinking his chocolate milk and eating pretzels he piped up with ‘it’s Thursday isn’t it? Yippee! Fish and chip day!” I was so happy 🙂

Friday was a half day at school for the younger two, ending with an Easter bonnet/Hat parade. Herbie enjoyed creating his hat with big sister Lily and wore it with pride. The day just got better and better with a lovely bag of sweet treats from best buddies Lily & Sam in his draw and then he was chosen as star of the week which meant he got to bring the class bear home for the holidays. I thought he might burst with happiness!

My little Easter Bunny

We went back at 1pm for the parade and Herbie ran back into his classroom. He came out moments later leading his class , as star of the week, in the parade. His happiness evident. What a great end to his term! Today he has been totally on form, eating, drinking, playing & happy.

In other news, the BBC Documentary series about Great Ormond Street is closer to airing which means things are stepping up a gear. Catey and Hiral arrived with our footage. We haven’t seen the entire episode as we are not allowed to see the other featured children. As you can imagine we are also not allowed to talk about what is in the programme but I can say two things. I needed tissues to watch it and we are very happy with our representation. I hope that it will be watched by many ( I will post as soon as I know the exact air date) and  that it will encourage people to join the Bone Marrow Donor register and potentially save the life of somebody that finds themselves in a life threatening situation. I also hope that the immunology and BMT teams will be seen for the amazing work they do and the difficult decisions that they are faced with. Parents are hoping that they have every answer but with most PIDS things aren’t that simple. This can be frustrating for the parents but also equally frustrating for the medical teams whose sole purpose is to save lives. So many PIDS are newly discovered, extremely rare and outcomes are hard to predict. The GOSH publicity department have been in touch with us about publicity surrounding the episode. It’s going to be an exciting and strange time.

Herbie asked me about the blog today. He said “if you email the blog to my doctors then they wouldn’t need to see me anymore because they could just read how I am ” It made me laugh that he sees life so simply when his is often so complicated. One thing I have noticed is that memories of transplant are already fading and selective for him. He remembers some things so clearly and fondly. Certain nurses, special times when he got to do something fun. I’m so happy that he is forgetting the less happy times. The only thing he often remembers with a grimace is the weekly NPA “it was every Monday and I HATED IT!”

So we are ready to enjoy the Easter break, despite two days in the JR next week for IVIG therapy and Pamidronate and then the following week a day in London at GOSH. Let’s hope things are back on the straight and narrow for a while.  ( but don’t hold your breath 😉)

Up, down and all around

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So I’ m sure that  it’s been way too long since I lasted posted and for those of you who don’t actually see me regularly or know what has been happening I’m sorry for the lack of communication.

From November 2014 to a few weeks ago we have had a wonderfully settled period post transplant and I  (probably naively) thought the corner was well and truly turned and that Herbie was over  ‘the worst’.

Our last GOSH appointment was 4 weeks ago and at that point we were weaning the prednisolone (steroid) down to 5mg  a day instead of 5mg twice a day and it had gone really well with no repeat performances of the yoyoing in and out of the JR like last time.  We discussed the next step with Waseem and he was keen to keep the steroid in place whilst we removed the ciclosporin (the other immune suppressant)  and so we  had a plan to leave the steroid at 5mg for one more week and then begin a wean of 0.05mls a week of ciclosporin. This would mean that on our return to GOSH in 6 weeks time Herbie would finally be ciclosporin free! I was so excited at this prospect. Finally his T cell reconstitution might actually get a boost. Waseem told us to watch Herbie’s skin closely for signs of GVHD but everyone was happy that it looked pretty fab right now and that his revoltingly large wart/verruca on his foot was completely gone without treatment.

It was funny to see Dr Johannes Truck from the JR in our GOSH appointment, it’s not the first time that our hospitals have merged and it’s great that they work so closely. Sadly Herbie was a tad rude (overfamiliar really ) and whilst doing his trademark pointing from eyes to Dr,he said ‘Don’t even think about it Truck!” Which although the Dr’s smirked sparked a reprimand from Dan & I, we were so embarrassed ! The positive appointment continued right to the end with Waseem sharing a joke with Herbie and Herbie telling him that he wanted to go to school for longer than an hour and a half each day! A plan was formulated.

Herbie returned to school the following day and stayed until lunch time, he was thrilled! He didn’t seem at all tired by the extra hours. He was able to participate in the Mother’s Day concert and although he had his gammaplex infusion on World Book Day he went to the hospital dressed as Shaun the Sheep!

Then two weeks ago he said his tummy hurt and he seemed to be eating less and less. Remember that this was the boy who literally was eating as soon as his eyes opened! Now he just couldn’t face food before 11.30-12! The drop in steroids seemed the likely culprit initially but then his stools started to be more frequent and looser and then he started being sick.  We held our breath. School reported a tummy bug in school so we assumed it was this. The sickness wasn’t much and after two episodes he managed 49 hours vomit free meaning he could return to school but we gave him an extra 24 hours to be safe. He returned to school and the following day was sick again.  Throughout this time  we had continued with the ciclosporin wean but suddenly I noticed that his last loose stools were green…this all pointed to gut GVHD. I called GOSH for advice. His temperature had been up but not above 37.9 so no automatic admission. Waseem advised we returned the ciclosporin to it’s original 0.35ml  dose and held the steroid at 5mg until our next appointment. Cultures were to be taken from the line if his temp went about 37.5.  Things settled quickly and we felt reassured by GOSH’s instruction. The symptoms settled quite quickly and all that I had left to concern me was that he appeared to be breathing quickly and getting breathless

.

Last Thursday Morag came to do a ciclosporin level and repeated bloods and did cultures as we were concerned about his breathing and despite the thermometer saying 37.2 he felt warm. We went to see the ID team at the JR for a once over for peace of mind. A thorough check up revealed nothing untoward and after a few swabs etc taken from his throat we were sent home with instructions to call if anything got worse. His bloods came back unremarkable , his CRP was 62 which, as the doctor pointed out, was one of the lowest CRP results they have ever had for Herbie!  The normal range is 0-5, so clearly something was going on. The plan was to repeat it on Monday to see if it was on it’s way up or down! All virology came back negative as did cultures.  As usual Herb keeps us guessing!

The weekend went well. Herbie began to show an interest in eating again, not loads but some! He was able to attend my uncle’s 80th birthday party and he danced and had a great time. He didn’t get to bed until midnight! Sunday was a lazy day for us all but Herb was able to eat a meal and things looked promising that we were on the mend x

Monday I kept him from school as his immunity was low and had taken a hit from whatever had been going on this past week. Our immunology nurse had said this was a good idea. He was very perky all day though  and I assumed he  would go back to school Tuesday or Wednesday. So this morning when he woke and I could tell he was warm I was so miserable ! Again he was 37.9 but never went over 38. He said his tummy and head hurt. After an hour he was 37.5 but his head still hurt so he had calpol and perked up no end, asking to visit my mum and dad for bacon sandwiches and hula hoops! He did eat the crisps and had a mouthful or two of bacon but the appetite is still very much subdued. His CRP came back at 10 from yesterday so on it’s way down. Perhaps his body is just struggling to kick this virus or maybe the GVHD is simmering?

The  good news is that we had his parent consultation at school and his teacher is pleased with his progress saying he’s not behind at all. She is thrilled that he is back and is only sad he can’t stay longer.  The feeling is mutual! He has loved being back , doing the normal things, making Mother’s Day cards and reading books and doing homework! Here is his Mother’s Day card!

So he will probably not return to school this week. There will be a two week Easter break and hopefully the viruses will be less, his immunity will improve and we can continue on to his 1st rebirth day on May 16th in a positive zone.

Please could you cough in the other direction? Thank you!

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Thankfully I really haven’t had much to blog about recently which is a good thing! However I wanted to make sure that this part of the post transplant journey is still documented!

Herbie continues to attend school most mornings from 8.50-10.30am. He still LOVES it! He’s reunited with friends, teachers & his beloved Sully dressing up costume!

 

We  had hoped that by now he would be doing mornings only but there have been a few, albeit minor,  spanners in the works.  We were sent an email  on January 19th  containing blood results and a note saying that immunology numbers were low  so we should remain vigilant and not up the school hours until further notice. This came as a blow because we really thought his numbers would be back up.  He was sad that the promise of longer days in school had been retracted  and it was hard on him. That said,  he is clever enough to understand how important it is that we adhere to Waseem’s wishes, however frustrating, as they are all with his best interests at heart. We’ve come too far to start taking silly chances.

School is , as you can imagine, a double edged sword. After all of those months (over 13) of not attending it is an absolute joy to see that beaming face each morning and to watch as he does the normal things. He  is often dressed and ready for school before I’m out of bed! He is keen to read every night and to do his homework. School brings him such joy.

As parents though it’s so much harder. My ‘illness’ & ‘germ’ sensors are heightened. Every cough sounds like a deafening gun shot in my ears and I find that children with green strings descending from their nose send me into a mild panic that I’ve never known before! I’m a primary school teacher for goodness sake, I’m used to the Winter terms being full of classes of children exhibiting symptoms like this but now the goal posts have changed. Now I’m a crusader, I’m always watching for signs of something that, mild and trivial to most children, could be potentially dangerous to mine.

School sent out a polite notice to parents asking for consideration, I was so grateful and happier still to hear that  parents were ringing up to report their child’s absence through illness & citing  Herbie as a reason for being overly cautious.  Still my nerves are on edge. I look at children wondering, have they had chicken pox or been exposed to it?  Did their parents vaccinate them? I never considered this before! When he’s not at school I try to break up the boredom of the day with trips to quiet child free places. These really don’t exist! Home schoolers, Pre schoolers and babies, again with barking coughs and snotty noses are in every nook and cranny.

“Keep him home then!” I hear you shout. Part of me wants to but this is a stage, like every other stage before it, that we need to face sensibly and with as much knowledge as we can. It too shall soon pass!

The medicines are still pretty much the same although we are weaning the steroid. As I type this he takes 5mg in the morning and 3mg in the evening.  We hope to wean off the evening dose very soon and then he will stay on 5mg daily as a holding dose whilst we wean ciclosporin . This is much later than most of the other children that went through transplant at the same time but Herbie’s immune deficiency is rare and as his particular version of it has never before been documented it means they must proceed with caution.

On a positive note, and to prove I don’t wrap him in cotton wool completely, we went to watch the local village panto, Ali Baba. The girls were in it again and Herbie was so keen to go. Thanks to Bryony & Caz Woodruff for ensuring us front row seats so that Herbie could come and see (and not be surrounded by germs!). Also a touching moment during the evening was when Jaimie Bunting, who played Ali’s mum ,(and he looked fab in a dress although the girls did wonder how they would keep a straight face in Geography the following week as he’s their teacher!) called Rufus & Herbie up to the stage for a ‘shout out’.

Herbie loved every minute of the evening and couldn’t wait to get on the stage himself!

 

Other highlights have been learning that our fundraising for GOSH continues to grow, putting us in the top 1% of fundraisers

 

Herbie continues to hear from the wonderful Hope , who sent a fab birthday card and gift of Moshi gloves and hat etc just in time for the cold snap. Thank you Hope!

We hope to update again with more positive news soon. In the mean time I wish you a happy and healthy February…

“That was awesome”

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Lots of reminiscing in the first post of 2015. 6 years ago on Monday Herbie literally tumbled into my arms and our family was complete. Born just before the sun came up on a rainy day in January we  were thrilled will our dark  haired little bundle of loveliness. He weighed 7lb 1oz (the same weight as one of our twins (Lily) was at birth although he seemed tiny after Rufus who just shy of 10lb) and was perfect.  )

 

I

Last January he turned 5. It wasn’t what you want for your child’s 5th birthday. Having been admitted into hospital five days earlier (with a rash that his consultants thought was shingles) he spent his 5th birthday having a blood transfusion and feeling pretty rubbish. He was thin, tired and although he tried to be enthusiastic about presents and the balloons and cake etc it was obvious that it was to keep us happy.

 

Fast forward to this year, on Monday he turned 6! The first difference was that he was at home. The night before he was more excited than Christmas Eve , he couldn’t sleep. In fairness there was more than just the birthday on his mind. More of that  in a minute.

The big day arrived and it really was a big day. Herbie wasn’t just turning 6 but he was returning to school for the first time since pre transplant.  There were a few uniform issues. He no longer fits the school uniform. His age 5 polo shirts were replaced for age 8 ones! His trousers were elasticated!  But he didn’t care one bit…he was going to school!

The birthday continued with an hour and a half in school (I was in the building as the line safety training hadn’t been given to staff yet) and then we returned home with more gifts to open.  Herbie loved being back with his buddies at school though. Was I nervous? Yes, every cough, sneeze or runny nose around him makes me a little anxious. Was he? Not a bit!

This year candles were blown out and cake was eaten and plenty of excitement was apparent ! He requested a roast dinner with sprouts! Dan made him one of course.  Another milestone met, another sad memory overwritten. As I tucked him up in his bed that night he cuddled me and said “Today was AWESOME”. Can’t ask for a better verdict than that! 

Today we had our first 2015 outpatient appointment at GOSH. As we drove there this morning we found ourselves, once again, thinking about our first 2014 GOSH appointment. We  remembered the shock of the discussion about BMT being the best option for Herbie when he was better. The tears on the M40 as we drove home trying to digest what we had been told. Oh how 12 months changes things. There were smiles, ‘happy new year’ greetings with the now all to familiar staff. We bumped into one of our fab Robin nurses, Lucinda, on our way in. We bumped into Helen, his GOSH teacher, on our way out.  As we waited  Paul Veys came to collect some notes and Herb shouted “I’ve still got my eye on you Paul Veys” making us all chuckle and prompting a mini catch up chat. Then Catey, from the BBC crew came to talk to us about the final edit of the film and what we could expect to see. It’s actually quite exciting!

In the appointment, Waseem was happy with progress. A steroid reduction plan was made and for the first time the hint of a wean time for cyclosporin was released from the bag. It’s a slow process for Herbie but worth it.  All in all things are headed in the right direction.

As we went to make an appointment for 6 weeks time we bumped into Juliet and Sebastien , our friends from our time on the BMT wards. After a catch up with them and Catey, Dollan & Sam from the film crew we had promotional photos taken for the series before heading back home.

We are feeling positive…maybe, at last, 2015 will be a year to remember for positive & happy things. Friday we hit the 8 months post transplant milestone  and next Thursday Herb is T+250! Time is flying!

 

Saying goodbye to 2014 and thank you to you

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So here we are on the last day of 2014. What a year, what a roller coaster we’ve been on.

On NYE 2013 Dan and I stayed home and there were many tears , many hugs and  despite trying to be optimistic there were moments of despair. As others celebrated and drank and ate their way into the early hours of 2014 we tried to make sense of what 2013 had left as a legacy and we hoped that 2014 would bring us strength to deal with what may be ahead

As many of you know, the first few days of 2014 didn’t offer the promise of better times initially and by Jan 7th Herbie was readmitted to hospital and the bone marrow transplant process really picked up with a sense of urgency. Once again though I remind myself of this not to dwell on the sad times but to put into perspective the place we are in now.

We have had a brilliant Christmas and Herbie has been a ble to enjoy the season like most other 5 year olds in the main. Obviously there are still restrictions on us all  which has lead to some family members not being able to come to gatherings due to sniffles etc that they don’t want to pass on and in fact our New Year plans have been altered for this very reason! We are grateful that our families have been thoughtful and accommodating  though so that we don’t need to miss out for a second year running.

As well as being so grateful to be in a different place at the end of 2014 from the place that we started we want to say thank you.

Thank you to our amazing children who have been so brilliant this year and put up with so much disruption but kept us focused and in touch with reality when we felt like we were living in another time zone. We love you all so much.

Thank you to our families who have been the most wonderful support to us this year with the age old staples of love and care as well as providing childcare, gifts, food, transport etc etc and just being there. Our mums, dads, brothers, sisters, brothers in law, sisters in law, nieces, nephews, cousins , aunties, uncles…you are all fabulous…we love you…thank you.

Our friends, old, new and virtual…who have supported us, messaged us, been there for us at the hardest times. That text that arrives at just the right moment, the phone call just to say hello, the offer of a quick break and all of the gifts, cards , letters and thoughtful gestures. Without these we wouldn’t have made it through, especially the weeks in transplant. Our friends mean so much to us and we are lucky to have you all x

Work…My school colleagues have made this journey so much easier. They have allowed me to switch off from the worry of career for a while to immerse myself in being a full time care giver and I thank them for that. The stress of it all engulfs you and there is no room to think of anything else.  Thank you for being there, for sending messages, gifts and keeping me in the loop. Xx I look forward to getting back into the fold in 2015.

For Dan it’s a different story, he couldn’t give up work as it’s his own business but his wonderful customers have been supportive and flexible and understanding and I know that without the support of everyone and particularly his friends at Prentice he wouldn’t have made it without a serious breakdown so thank you xx

School…I know if you read this blog regularly you will know that the children have been so supported by their schools and Herbie has been made to feel that he is still a major part of his class despite not attending for over a year. Rufus was the proud recipient of a gold Blue Peter badge, the super hero day was amazing and the school raised almost £1.5k for Great Ormond Street. I also include Hospital School here as they have been brilliant, especially the wonderful Victoria and Juliet from Oxford and Helen from GOSH and all of those at The Hub.

With all of the medical intervention this year we obviously need to thank the amazing teams at the JR hospital in Oxford and GOSH in London. Especially the doctors from the ID team & Dr Hull and the  staff on Bellhouse Drayson , Tom’s & CDCW in Oxford. Waseem Qasim , Paul Veys , the immunology and BMT teams and Robin Ward in GOSH. You are fabulous!

Finally our amazing Community Nurses, Morag, Sarah, Laura, Ele (and Becky!) who have been part of our daily lives since 2013 and will continue as part of our weekly routine for some time. They have always gone out of their way to provide the best care for us and accommodate us above and beyond the call of duty. You rock!

This week Herbie had his final immunoglobulin infusion for 2014 and started Pamidronate for his bone density issues. We move into 2015 without tears and with optimism. We like this new place!  Thank you to those who sent gifts recently  and letters. Herbie was thrilled to hear from Hope again and I was touched by the thoughtfulness of the Ezboard mamas.

So Happy New Year to each and everyone of you . I hope it brings you happiness , and health x

I will blog again in 2015!