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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 ūüėā) 

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

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.

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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.

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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!

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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
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.

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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.

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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
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!
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.

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Little devil really kept up the pretence too!

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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!

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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.

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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!

 

When the smooth ride hits a bump…

T+191

So just when I allowed our family some breathing space, just when I figured we were getting to a place, 6 months post transplant, where we could relax just a little, things changed. I should know how this goes by now!

On Wednesday Herb woke up early and behaved the same as every morning. He didn’t eat much breakfast but seemed fine. He began to complain of a headache and said he felt sick. I gave him some calpol after checking first that he didn’t have a fever, he didn’t. He was sick but said afterwards that he felt good. He spent the day on the sofa playing games as usual on his ipad but we decided not to go to The Hub as he wasn’t quite right.
By 5pm it became apparent that he was definitely under the weather. After many battles with many thermometers, the Braun ear thermometer, a forehead scanner and the GOS faithful tempadot , all of which gave varying temperatures from 36.5 (normal) to 39.4 (definitely NOT normal), we called the JR switchboard with a heavy heart knowing that we were off to hospital for a minimum of 48 hours. Everyone was very sad.

It took some sorting out on the part of one of our lovely community nurses , Laura, to get Herb admitted. First of all he still needs a cubicle, not easy during November. We feared we may get sent to the Horton where he’s not known but thankfully a cubicle on Bellhouse Drayson was found, number 25. I know I should be thankful but cubicle 25 is where Herbie spent his 5th birthday and I dread being there!

Herbie was sick a few times before we set off to the hospital and when we arrived in the car park ( but that was possibly due to Dan’s inability to decide on a parking space!)
He walked into room 25, lay on the bed and just got hotter. Rebecca , the nurse who looked after him on his 5th birthday, looked after him until handover. She asked if we would prefer another free cubicle, number 16, she understood!

Cultures were taken and Pip/TAZ started , iv fluids put up and calpol administered. Dan left to return to the other three children and I settled down for the night. Dr Mannesh reassured me by saying he thought it was likely to be viral and that he didn’t look as bad as he had on previous admissions.

Thursday arrived but sadly no improvement. He felt sick much of the day and complained that his head hurt. He slept, was sick a few times and didn’t eat or drink. The iv fluids stayed up. Victoria (his outreach teacher) came to play a game with him and he brightened on her arrival.

I spent a lot of time thinking during Thursday and Friday. It was all a bit too much like d√©j√† vu. This time last year we were in and out of the JR as Christmas started popping up all around us. I didn’t want to be here again. I had promised all of my children and Dan, a different December , a happier, non hospitalised one.
Friday I had hoped would be the day we were discharged but it was clear from early on that this would not happen. I noticed that odd blotches were appearing over his body, they were not raised or spot like, so I hoped it was just a viral rash.
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He spent the morning laying on my bed watching a Christmas film on the ipad.

Watching a Christmas film
Watching a Christmas film

Amikacin was restarted and the steroids went back up…it all seemed like a backward step and I felt quite disheartened and flat for the first time in a long time.
Andy, the music man, came and asked if he would like to play the instruments , something he loves to do. His reply… “No thank you”.
Victoria came in to cook croissants and he seemed willing at first. When she realised she had forgotten her scales she stepped out to get them. I made a move to get my long awaited cup of tea “don’t go mummy” came a small voice. How could I go after that?
Victoria returned and cooking began but it was clear that Herbie just didn’t feel up to it. Victoria helped him out.

Making croissants with Victoria
Making croissants with Victoria

Making croissants with Victoria
Victoria took the dough off to prove and Herbie fell asleep. He slept for about 4 hours.
Dan arrived and he finally woke up. He seemed brighter straight away and I noticed that he was sitting up properly. Dan took over hospital duty and I returned home , slightly hopeful that we might be close to turning a corner.

Saturday morning came and not unlike our GOS days I waited for the text from Dan containing the news. How was he? Was he afebrile? Did he still have iv fluids? Had he been sick?
Here is our exchange!
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Followed by…

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I couldn’t wait to go and see for myself. When I arrived at the hospital it really was brilliant to see him looking so much better.

By Sunday at 1pm he was discharged home.
It was a rocky couple of days but cultures were negative and it looks likely that it was just a nasty virus.
I feel like I need a huge stash of cotton wool to wrap him up in until Christmas! For now he is home , for that I’m grateful!

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!
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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!
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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!
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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.

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