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 😉)

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

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T+266

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!

 

Carefully running up to Christmas

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Where do I start? Probably with an apology. It’s been some time since my last blog post and I know that some of you that are not on Facebook or that don’t see me daily will be wondering what has been happening.  Well I’m pleased to report that things have been going well and I have quite a lot to report!

After the hospital admission in November we had a speedy recovery.  Within a day of being home Rufus and other friends and family came down with the same symptoms confirming that Herbie had indeed just had a virus. I chatted with our GOSH immunology nurse who reminded me that he was only hospitalised as he has a Hickman line. The Hickman Line must remain free of infection and any fever could potentially be a line infection.

As the days went by we all got back into routine. At the start of December there was much excitement as our North Pole elf returned to spend the month with us. Last year he helped Herbie get through some tough times.

Christmas 2013 with Claus McJingle

 

Everyone was pleased to see that he had returned as it heralds the run up to Christmas has started.

 

 

Dan and I were excited but cautious…we know how quickly situations can change so we vowed to continue to take each day at a time And enjoy it. This was kicked off by a lovely ‘tea’ at the Randolph Hotel and a little Christmas shopping in Oxford courtesy of the lovely Lynsey and Archie. They had given us the voucher back in the summer whilst we were in GOSH and it was great to finally get the breathing space to use it. We had a lovely afternoon.

 

On the Wednesday we had a big day of appointments at GOSH. You may recall that our GOSH consultant agreed to bring the scans forward a few weeks in order to see if the iv Micafungin was still required.  Community nurses were due to us for 8am to do the dose prior to heading to London but when we didn’t have anyone knocking at our door by 8.30am (which was very very unusual) we knew something was up and that we would have to go to London without the iv and have it later.  I started to worry that the day wasn’t going to plan, it felt like a less than positive start to this important day but the journey to London was  easy and we began to relax.

London looked festive. Herbie enjoyed the tree and lights in Brunswick Square and we reminisced  about our time in transplant and the warm summer days spent walking there. What a contrast.

We arrived in time to get our scans , Herbie had the usual obs and all were good (his weight continues to increase… those steroids!!)

First he had the CT scan. We’ve really had too many of these this year, in fact we were told no more for a year back in June but  hey ho!

 

Herbie took it all his in stride. The scan was over quickly and then we raced  up to  see Waseem who confirmed that if the scan looked the same or improved the iv would stop but that he couldn’t let us know until the following week after the reports were in.

We  then had a dexa scan to check bone density  (long term steroid use effects this) and a lung function test. The lung function test results were fed back immediately…best yet! We were thrilled as he’s in the 90%+ range.

A quick visit to the Lagoon to grab food and we bumped into Holly, one of our lovely Robin Ward nurses from transplant. We were so pleased to see her. Herbie had a quick look at the Christmas display and we wrote a message for those still in hospital and posted it.

Then it was time to head home. I felt that the next few days would be so tricky as we waited for news from the CT.  We prepared ourselves for Waseem to say that we needed to continue with the iv. It may not seem such a big deal but if the iv could stop that meant no more daily community nurse visits and this meant more freedom and also  we wouldn’t have a repeat of last Christmas which was dominated by illness and nurse visits.

The following day I noticed a missed call from Ele, one of our community nurses.  I called her back and she asked if I had heard the news? I hadn’t ! The scans were much improved and the iv was stopped! I was so so happy and Herbie punched the air and shouted YES! when Ele told him.  Almost a year since the iv’s began he was finally finished with them. It was music to my ears.  We went straight out, because we could!

The following day  we had a call from GOSH to confirm that we had heard the news and to give more info on the scans. The CT showed overall improvements which was great but then we were advised that the DEXA scan had shown that his spine was a little fragile from long term steroid use and that he would need some iv therapy for that. I was shocked as I think the DEXA scan was the one I literally hadn’t worried about!  We hoped that it would be arranged so that we could administer at the JR rather than GOSH as the loading dose was to be given over three consecutive days.

Thankfully there  wasn’t time to dwell on it as Herbie had an important job to do. He was  playing Angel Gabriel in the school Nativity. Last year he missed his first Nativity as he was so unwell. This year his teachers had discussed with me early on that they would like him to be Angel Gabriel by Skype if he was unable to be there. Waseem had told us that he could take part it in if all was ok at school and so we went ahead. Herbie loved everything about it, being reunited with classmates, dressing up, being on stage and all of the whoops and cheers he was given. “This is the best thing that has happened to me all year ” he said.

It was emotional watching him on the stage, beaming from ear to ear , speaking his lines so clearly and faultlessly. We couldn’t have been prouder.

Herbie actually made the Nativity this year

Today we had our annual family Secret Santa party. This was again a time for reflection as last year we knew that the following day Herbie was to have a lung biopsy. He was due to spend three days in hospital but ended up being in almost until Christmas Day.  He also spiked a temperature  at last years party and needed to go home. This year he had a ball , dressed as Olaf the snowman (his secret Santa gift) we were able to see our boy and his siblings and cousins start their Christmas countdown.

 

So I will sign off now with 10 days until Christmas and 2 days until Herbie is 7 months post transplant.

I will post again hopefully before the big day. Fingers crossed that the news continues to stay positive. We are now totally off MMF and the steroids are being weaned to (6mls twice daily) . His bloods, although hit rather hard after the virus a few weeks back, are recovering

HB 13.8

WCC 6.71

Neutrophils 5.03

lymphocytes 0.27

platelets 226

My little elf

 

hope you are all feeling festive!

 

 

 

 

Half a year ago…

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6 MONTHS POST TRANSPLANT

I must warn you that I am about to share some photos that you may find difficult to view. I started this blog when we knew Herbie needed an imminent bone marrow transplant but there had been many many difficult times before then. I’m not trying to shock you, this blog was always meant to be a positive and truthful account of our experiences but  in order to celebrate where we are today it’s important to realise how far we have travelled.

A year ago  our happy 4 year old had spent the day lethargic and with a fever.  He wasn’t able to go to school on the  following day…that’s where this BMT journey began.  We had also had other tough times with our boy, meningitis, lung problems and horrible lumps that needed surgery on his neck.

 

Reasons why we celebrate 6 months post transplant

So today I reflect once again on the tough times that my youngest boy has gone through , since this time last year alone he has endured a lung biopsy and lung wash, 3 surgeries on his neck, insertion of a peg, insertion of a PICC line and then of a double lumen Hickman line. He’s had daily iv’s since December, he’s had more blood tests than I can count, he’s had skin biopsies , numerous X-rays , CT scans, lung function tests, ultra sounds and taken a mountain of drugs.
I know many children endure the same and worse but when you live through it with your own precious child it engulfs you.

However today’s post is actually meant to be a celebration! 6 months ago today that moment happened, Rufus gave his bone marrow to his brother and Herbie, fresh from chemotherapy, began the journey of the reconstruction of his immune system. Yes it’s been a roller coaster ride, yes there have been times when I’ve thought “when will this settle down” “when will we get home” “when will these meds stop” but here we are, still standing, still positive and still moving on.
Herbie found out this week that he is going to be Angel Gabriel in his school nativity! Dr Waseem says he can go back to school full time in the new year and visit before then. We are understandably nervous knowing what a breeding ground for bugs schools are at this time of the year. So he will be in the play if all is well but if it’s too risky they will record him and project him on a screen. I am so grateful to the teachers in Rufus and Herbie’s classes for making this possible. The inclusion has been wonderful.

In other news we are now weaned off of MMF which is great, one immunosuppressant down. On Wednesday, if their is no sign of GVHD returning, we can reduce the steroid (another immune suppressant ) too. Only by 2ml per dose but we are happy that the wean is slow and safe.
Herbie has had a good week. The steroids make him eat loads and he drinks his 1600ml required daily almost exclusively in chocolate milk and orange juice making his calorie intake rather impressive!

Eating bacon butties with Papa after the hub visit this week.& on Children In Need Day (hence the ears!!!)

Bloods continue to make comforting reading

HB 14.3
WCC 10.9
Platelets 167
Neutrophils 9.37
Lymphocytes 0.22

Engraftment 100%
Cd4 220

We will keep on to the next appointment in December which will involve more tests and scans but hopefully good news and stopping of the iv!
Thank you to everyone near and far for every little bit of support so far, it means so much to us all xxxxx

Rockets, sparklers and miles of smiles…

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

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

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

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

 

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

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

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

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

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

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

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

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

Yay! Catching up with Rehka & Ella

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

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

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

 

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

 

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

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

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

 

Bloods…

HB 15

WCC 9.12

Platelets 166

Neutrophils 8.30

lymphocytes 0.18

 

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

Floating on a millpond

T+142

We are approaching 5 months post transplant. Some days this fact blows me away, are we really almost half a year on from transplant? Other days those GOS isolation days seem a million miles away.

These last few weeks have ticked by with very little to mention (hence no posts.) This is undoubtedly a good thing given the weeks that followed our initial stay at GOS but it has also given me time to ask questions, think about our situation and ponder the near future.

As we approach the 5 month post transplant mark on October 16th it is with bewilderment that I realise that this whole episode began on November 15th 2013, almost a year ago. I see Children in Need adverts, merchandise etc and remember that it was the last day that Herbie attended school properly and that I went to work properly.
I don’t want another Christmas Day planned around community nurse visits and iv’s. I truly believed that Christmas 2014, post transplant, would be a very different, happy and carefree experience to the 2013 one that was all about iv’s, fevers and at times despair. It’s approaching fast and I have high hopes but now I ask myself

Will we be iv free?

Will we return to school/work in January?

Will we be free of lots of oral meds?

What does the immediate future hold for us all?

Tomorrow we return to GOS for our first immunology appointment post transplant with consultant Waseem Qasim. We know he is usually proactive. We have a list of questions needing answers, we have high hopes.

Herbie continues to be in fine form albeit slightly rounder than he was due to excessive hunger from steroids. He meets his fluid target easily each day and he is fever free now for well over 5 weeks. We feel that we are standing still, we need to restart the meds wean and let this new immune system begin to grow and settle. It’s a balancing act, an art even, to juggle these medicines and start to withdraw some without causing some reaction.

Last week the bloods came in, looking very good still

WCC 7.2
HB 13.3
Neutrophils 6.51
Lymphocytes 0.22
Platelets 159

The only worrying result was a huge jump in a liver result called ALT which had leapt into the 100’s, double what it should be. It could just be a steroid reaction as other liver results were fine or a rogue result but with the amount of meds he is on it is a worry. That said we had no response from GOS when they received the results so we are assuming that they are not worried.

So tomorrow we head off to The Big Smoke…keep everything crossed for an informative and positive appointment (and speedy too if that’s not too greedy!)

Taking the scenic route

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

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

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

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

Still, it was a relief that the ultrasound looked good and they upped the steroid again(we had just weaned that too!) to counteract the GVHD.
Once the temperature was gone he was ‘old Herb’ just a little blotchier!

Still blowing raspberries at the doctors (and some poor nurses!) but always happy to see the ward play specialists Grace & Sam and Juliet the hospital school teacher!


By the evening it was decided, in consultation with GOS, that if temps stayed away, culture were negative and GVHD under control he could stop the TAZ in the morning and could go home on Wednesday.

Day T+110
Wednesday arrived, the three others were all packed off to school sporting new uniforms and with much excitement and I headed to the JR again.

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

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

Working with Juliet

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

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

GVHD

100 days and beyond

Today is T+105

It’s been a week since I last updated. About an hour after the last blog was posted we were informed by the doctor that Herbie could go home after 24 hours observation without TAZ. This went down like a lead balloon with Herbie. Dr Ed, who was given the unpleasant task of passing on the information, knew what the reaction would be and asked me to go to the nurses station to talk to him out of Herbie’s earshot. Whilst we were chatting Herbie appeared by my side shouting “I’m going home you know , I’m not staying here!”
It took a long time to calm him down but he eventually he realised, one more sleep and he could go home.
That night I asked our nurse , Amy , if she could get our blood results completed in our shared care folder ready to go home in the morning. Later the doctor arrived with the folder, she wanted to ‘give me the heads up about the bloods.” It all sounded a little ominous.
This is what she was worrying about…
On arrival Herbie’s bloods were as follows
HB 11.8
WBC 4.67
Neutrophils 3.56
Lymphocytes 0.42
Platelets 81

Over the last few weeks he has had a lot of TAZ and this can drop his counts which we have seen. So after another 50+ hours of TAZ it wasn’t a surprise to see they had dropped again but it was a worry.

HB 10.5
WCC 1.73
Neutrophils 0.95
Lymphocytes 0.29
Platelets 72

The dr said that GOS and Prof Pollard were aware but happy for us to still go in the morning. I won’t lie to you, I was shocked to see how low everything was. It was not unlike the days in GOS in the early days after transplant. I hadn’t expected to see numbers that low again.
We agreed that another blood sample be sent in the morning before we left to see if the trend was continuing downwards.

T+99 we were ready to go home rather early! Herbie was dressed and packed up at 7am. The blood results came in and they were not what I had hoped.
HB 9.9
WCC 1.38
Neutrophils 0.61
Lymphocytes 0.29
Platelets 69

The neutrophils were now well under 1 and close to needing GCSF, something we hadn’t needed since early June. We returned home wondering how this would all pan out and hoping that by Tuesday, when the next bloods were due the trend would reverse.

Herbie settled back at home and Dan and I wondered how long we would get this time.
Things have settled down this past week and the bloods picked right back up on Tuesday as follows…
HB 11.5
WBC 4.74
Neutrophils 3.56
Lymphocytes 0.47
Platelets 81

Herbie still has a 1600ml fluid target but thankfully since returning home we have not needed water boluses over night and the pump has stayed well and truly in the cupboard (which is just where we like it! )
We have almost weaned the steroid and the MMF now so things are moving forward and despite how completely mad this roller coaster ride seems to us GOS say that are extremely pleased with his progress post BMT!

One day this week we were concerned that Herbie’s temperature might be rising again but his body seemed to control it going from 37.6 back down to 36.8 without the need for calpol or a call to the BMT on all reg.
He’s been bouncy and happy and just a little stir crazy, can’t wait to get him out and about!

So as the new school term approaches I greet it with mixed emotions. My first born Lily, so seriously ill last summer, starts secondary school with her twin sister. She is happy, healthy and a completely different girl to the one who suffered so much last year. Last year she returned to Year 6 with a cushingoid face, tiny frame, almost unrecognisable from who she is today. For that I am so so grateful.
This time last year I was starting to get excited about my new class, home visiting etc. They were a fabulous class, with so much promise. I hoped to be in school all year, unlike the year before, and was confident about that.
Herbie was starting school
He was an excited 4 year old boy who couldn’t wait to join his siblings at the local primary school. November the 15th 2013 was the last real day he attended. He’s done a few sessions since but literally a handful. He won’t return to school to rejoin his class mates in September and my class of 2013-14 have moved on to the next teacher and my new class will remain names on a list until Herbie is well enough for me to return. That makes both of us sad. However Herbie will get to see his lovely outreach teacher again which makes us happy!

I have so much hope for the future though, things are going in the right direction, we will keep going.
I received a lovely gift from a friend’s mum this week…couldn’t have been more apt…thank you