Tag Archives: NEMO immune deficiency

Egg-sacally what has been going on?

T+339

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!

image

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
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!)

image

 

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.

imageimage

 

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.

image

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 dateimage .

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.

image

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.

image

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…

My Small

 

and yesterday, 11 months post transplant

image

 

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!

image

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!

 

Up, down and all around

T+312

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

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

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

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

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

image

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

image.

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

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

imageimage

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

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

image

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

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


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!

 

image image

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!

image

 

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

image

 

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…

imageimage

“That was awesome”

T+242

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.  )

 

imageI

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.

image

image

 

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!

image image

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!

 

Happy Christmas

T+223

HAPPY CHRISTMAS!

I’m here at home , in front of my roaring fire, my four babies are in bed and I’m smiling.

We made it!

This time last year I felt so differently to the way I feel today.  As I was wrapping gifts late last night (even with plenty of planning time I was still wrapping at 1am!) I had time to think back to Christmases Past. Much like the Dickens novel, I was taken back to many memories of happy Christmases as a child. I had such a happy childhood and my Christmas memories are all brilliant. I remember singing carols in bed on Christmas Eve , letting my daddy creep down to be sure that Father Christmas had been before we went down to rip open the paper and reveal the very things we had been dreaming of.  Then when I was older there were wonderful times on Christmas Eve with my friends in the pub. Then there was my first pregnancy Christmas  with the arrival of our twins, Lily & Kitty, bang on 40 weeks two days after Christmas Day and the arrival 5 days before Christmas in 2007 of Rufus. So many happy times but also , as with all people, there are some more difficult memories. The loss of my grandad a few days before Christmas, those first Christmases with key family members missing, the  Christmases  when we had to cut the day short due to illness. These memories are ones I would rather not recall and one of these memories is Christmas 2013.

Christmas Day 2013 started with calpol for Herbie to bring down his fever and although he tried to show some interest in his sack gifts and stocking goodies he was clearly not well and  excitement was hard to muster. Presents were opened but left  as he climbed back onto the sofa and watched his siblings excitement.  Our only visitor on Christmas Day 2013 was Allie, a community nurse , who came to administer his iv antibiotics via his newly inserted PICC line. We waited until she had finished, by then Herbie was asleep, and we were able to go to my parents for Christmas dinner. Ibuprofen helped him to make it through another round of present opening there but he struggled again to find the enthusiasm to actually play with the toys or his siblings/cousins and he wasn’t hungry or remotely sociable. He got hot and needed meds, slept and complained his tummy hurt. We went home early feeling sad and robbed of a happy family Christmas that we had looked forward to after the year of worries over Lily’s health.

Fast forward to today, a year on, 7 months post bone marrow transplant. Our day was all we had hoped for . Last night the four children were so excited , just as they should be, with the anticipation of  Father Christmas visiting. Dan took three of the  children to the local Christingle service and then to the pub whilst Herbie and I stayed home watching a Christmas film and then wrapped some gifts. We were so excited.

image

Christmas excitement
Christmas excitement
Our Christmas Eve box left by our elf
Our Christmas Eve box left by our elf

 

We read Christmas stories, drank hot chocolate and watched a Christmas film before bed. Around 7.45-am this morning we all ran downstairs and opened the door to shouts of “he’s been, he’s been! From then on we had a text book day! Smiles, unwrapping, excitement, food and fun with cousins, siblings etc. Obviously there were the usual daily medicines but we had a normal day! No community nurse visits, no calpol and plenty of smiles and happy memories made. We had the Christmas Day, and indeed the run up to Christmas, that we had all hoped for. We hope that you did too!  We know that life is by no means back to normal but do you know what? It sure felt pretty normal today!

I did stop and think of those people that we have befriended during transplant a few times today. I knew that not everybody was having the day we were having.  Our friends who are still in GOS with their son, 8 months post transplant , who haven’t had their going home post transplant moment yet. Our friends whose 3 year old daughter was readmitted a couple of weeks ago with post transplant complications. (Although we later heard GOS had let her home for 9 hours to be with family). Our friends whose 11 year old son was taken into his local hospital two days ago with a fever and had a line infection confirmed and required hospital iv’s today.  Our friends who are spending their first Christmas without their son.  Our thoughts are with them.

Not everyone will be making a memory that they want to treasure today but I am grateful that we had the chance to do that this year.  So far Christmas 2014 is  magical and gives me hope that 2015 and beyond could be too.

Happy  Christmas x

image image image

 

 

Carefully running up to Christmas

T+212

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
Christmas 2013 with Claus McJingle

 

image

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.

image

 

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.

image

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!

image

 

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.

image

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.

image

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.

image

Herbie actually made the Nativity this year
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.

image image image

 

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
My little elf

 

hope you are all feeling festive!

 

 

 

 

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 déjà 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.
image
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!
image

Followed by…

image
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!