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!

 

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

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

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

 

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  He was sad that the promise of longer days in school had been retracted  and it was hard on him.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

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

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

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

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

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

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

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

 

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

 

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

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

“That was awesome”

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

 

I

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

 

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

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

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

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

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

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

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

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

 

Saying goodbye to 2014 and thank you to you

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I will blog again in 2015!

 

Happy Christmas

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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.

Christmas excitement

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

 

 

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!

 

 

 

 

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.

He spent the morning laying on my bed watching a Christmas film on the ipad.

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
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!

Followed by…

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!

Half a year ago…

T+183

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…

T+176

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

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

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

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

 

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

Pumpkins, carousels and a little magic!

T+168

We are almost at 6 months post transplant. Just 2 weeks to go. It’s quite amazing that time has gone so quickly! Herbie is also only 33 days away from his 200 days post transplant milestone. So where are we now?

Well this week has been half term. Initially Herbie was disappointed to learn that his outreach teachers wouldn’t be visiting and that we wouldn’t be going to The Hub.
On Thursday he spent an hour at the hub investigating flight and parachutes with Christine.

Term ended on another brilliant high for him with his teacher, Victoria, taking his finished story about tomato soup into his class at school so that they could hear it. Even more special, Victoria recorded it on the iPad and sent it to us to watch. Herbie was thrilled!
These special times have helped Herbie to feel part of a class that he hasn’t regularly attended for almost a year!

Having the other three home has been lovely but also highlighted our situation at times. Monday was Herbie’s immunoglobulin replacement therapy day and so Dan took him to allow me to take the others out.
Tuesday it was Lily’s turn to go to the JR! Her three month outpatient appointment with the ID team was very positive which was brilliant but another holiday day given up to the hospital.
Finally we had some hospital free days as Wednesday arrived. The problem is that with a community nurse visit at midday, lots of oral meds etc and children enjoying lie ins it’s hard to get out anywhere!

Herbie has remained well since my last blog post. He continues to look rather cushingoid in appearance due to the steroids but we know from Lily that as the steroids reduce his face will become less round and puffy. He has a lot more energy although his ipad and minecraft do take up quite a lot of his day, making him sofa based! His bloods remain quite good with high HB and platelets within range. Lymphocytes are attempting to increase but his immunosuppression will always stop them climbing too high.
Interestingly a wart that he had on the side of his foot prior to transplant, that disappeared after chemo,has recently returned and is huge! We were advised by GOS that this is just due to his immature immune system and not to treat it but I think we will show them on Wednesday as Herbie wants us to treat it.

On the Wednesday of half term the Fab Four headed around to grandma and grandpas to make a guy for the bonfire night celebrations on November 5th. They enjoyed creating the 2014 Guy and Herbie particularly enjoyed the change of scenery! Drinks and chocolate cake for refreshment and a few videos about The Gunpowder Plot (As Herb was intrigued by it all) and then we headed home.

Making guy

Watching an informative Bonfire night film.

Guy 2014

The following day we decided to bite the bullet and take Herbie to the Hallowe’en Howl at Millets Farm. It’s pretty much all outside and we couldn’t go until later when the iv’s were finished anyway so we hoped it would quieter.
We had a lovely time and Herbie loved the freedom.

Pumpkin patch

He was very excited to get a free ride on the carousel too!

It was funny how Herbie worried about seeing other children, at one point a child coughed and even though Herb was no where near them he said “let’s go, I think it’s a bit dangerous here!’
His hair continues to come back. Photos always make it seem patchy but you get the idea!

Hallowe’en 2014 kicked off with a small mummy wondering around the house around 7 am! Herb was so excited that he was ‘up & at ’em’ early. The pumpkins were carved and then with the girls at a birthday party we headed off in the car to ‘trick or treat’ a couple of family and friends.

Herbie loved it! He also got to see his cousins Otis & Felix, Charlie , Jude, Esta, Issy & Martha which he loved!

Armed with a bucket of sweeties we headed home and an exhausted but happy little mummy settled down to sleep (and I don’t mean me!!)
Today Herbie got to see two of his cousins, Harry & Lola , and he was in his element! He’s missed getting together with his cousins.

So we still feel we are floating on the millpond. Things are calm for us right now. We had a small reduction of the ciclosporin as his levels were high and we have stopped the potassium supplements (although it’s possible we may need them again in the future).
Our thoughts tonight go out to fellow BMT friends who have been experiencing rougher waters. May their ponds become calm soon.

Signing off until next Wednesday! We go to GOS for an outpatients appointment with Waseem. Lily is coming too.

Bloods this week (for anyone still remotely interested!)

HB 13.9
WCC 9.5
Neutrophils 8.36
Lymphocytes 0.38
Platelets 156