Tag Archives: children

Milestones, obstacles and conundrums

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

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

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

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

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

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

Judging the artwork
Judging the artwork

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

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

I'm hungry!
I’m hungry!

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

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Little devil really kept up the pretence too!

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

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

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

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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!

 

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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!

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

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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…

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“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.  )

 

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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.

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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!

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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.

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

I will blog again in 2015!

 

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
Christmas 2013 with Claus McJingle

 

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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.

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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.

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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!

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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.

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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.

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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.

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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.

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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!

 

 

 

 

Keeping us guessing

GVHD is a pain. What more can I say? It’s frustrating that Herbie even had it during transplant but for it to flare again so many days post is annoying.
When we left our local hospital last week we hoped that the new steroid dose would wipe it out. Sadly this didn’t happen. The rash didn’t really get worse but it was still ‘active’ and itchy and red. Last time Herbie’s hands and feet were awful , this time they are completely clear! It’s quite strange. It’s also odd to think that the rash is the new cells attacking Herbie’s body as foreign!

Last Friday I called GOS to let them know that the rash wasn’t really improving. I was called back later to say that the Dr, Robert , wanted us to up the steroid again. We did that from the 6pm dose and went to bed that night feeling confident that in a few days we would see an improvement.

Herbie was able to manage the itching with Piriton only which was good but anyone who has ever had an uncontrollable itch will know how annoying it can be. He was quite snappy and short tempered at times.

His spirits were lifted by a parcel of beautifully wrapped gifts from Kate and her lovely boys.

Thank you Tom & Ed
Thank you Tom & Ed


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Something for all 4 children and this for me! Thank you Kate & crew
Something for all 4 children and this for me! Thank you Kate & crew

The weekend was lovely and Herbie enjoyed his first jaunt out on his scooter since transplant. He was so happy to be out in the fresh air, unleashed!
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The GVHD continued to just ‘be there’ over the weekend. Dan and I thought we were going mad as we scoured his skin for any indication that it was retreating! In all honesty we both managed to find patches of improvement over the weekend but we knew deep down that the huge improvement that we longed for was still ‘on the run’.

GVHD rash on his arm
GVHD rash on his arm

On Monday, T+115, Victoria returned for the first time since the start of May to teach Herbie at home. He was looking forward to it but sadly just before she arrived he started saying he felt cold and shivery. His temperature was 37.5, my heart sank. We thought we were heading back to the local. Wrapped up in a hoodie and with a towel over his legs , he managed a session with Victoria. It was lovely to feel like we might be back to our old regime, a step closer to our original one too.

Once the school work was done he came back to the sofa and curled up a little but over the next 30 minutes he asked for food, drink and suddenly he seemed back to normal! His temperature returned to 36.8 and an hour later he was 36.4 and running about being cheeky!

Wednesday, T+117, was clinic day at GOSH and a week since we left the local. IV’s and bloods were done prior to getting into the car and then we headed to London. Traffic jams in Oxford and London made us late and we arrived 20 minutes after our appointment. I’d called through and been told it wasn’t a problem.
It’s funny how memories flood back as soon as you walk through the main entrance of the hospital. Thankfully Herbie was in fine form, unlike the previous visit, and things went smoothly. The waiting room was absolutely heaving and with some familiar faces too.

Waiting in Safari outpatients at GOSH
Waiting in Safari outpatients at GOSH

It was lovely to see the gorgeous baby Jack, whose story I had followed through BMT from the end of last year,and his mum Vicki and dad Rob. (You can follow his continuing story on Jack’s Journey on Facebook). He is facing a second BMT x
Then there were other faces from our time in BMT and it was fab to catch up with Esther and her gorgeous boy Ben who came out of transplant a few weeks after us.
We were finally called in to see a doctor at 2.15pm (0ver two hours after we arrived!)
It was a new doctor which I find unnerving at this stage of the game. She explained that the GVHD was only a stage 1-2 which was much better than last time and looked like it was active but recovering. In discussions about the fevers they decided it may be a mild line infection so they will culture both lumens on his Hickman Line on three separate occasions next week in the hope of catching the bug. If it’s not a line infection it may be the GVHD flare or some kind of auto immune response that cause the fevers.
There didn’t appear to be much to be concerned about though and everything else, his bloods etc, were very good and we are now transferred back to the immunology department with Dr Wasim for our next appointment in four weeks. Amazing! No med changes until the GVHD is gone and then the MMF wean can continue.

Bloods were as follows
HB 101
WCC 4.44
Neutrophils 3.33
Lymphocytes 0.23
Platelets 120
Engraftment still 100%

Herbie was as good as gold all day and yesterday woke bright and early and had another good day, eating and drinking well (haven’t used an over night water bolus for weeks now) and being happy and cool!

Odd food requests, carrots, baked beans and roasties!
Odd food requests, carrots, baked beans and roasties!

He met his Thursday/Friday teacher and really liked her and a new community nurse who also was new and got the seal of approval!

More goodies arrived for Herb,this time from Emma, who herself is feeling pretty grotty right now . Get well soon Emma and thanks for the fab Moshi/Lego gifts.

So here we are just about to enter T+120…
What a long road we have travelled so far and yet it stretches out before me into a hazy autumnal mist, calling us forward but giving away very little about the road up ahead and what we may encounter. For now though I am grateful that we are on our10th consecutive night at home, long may it continue!

Messages from his School  ALWAYS raise a smile
Messages from his School ALWAYS raise a smile

It’s all about family…

T+62

I have already blogged many times that during our 9 week stay in GOSH I had the privilege to make some new friends and we often chatted in the Robin Ward kitchen, used by parents from Robin and Fox Wards. Sometimes it was a passing “hello, how’s your son/daughter doing today?” as we made a cup of tea , washed up a plate or came to grab something from the fridge. Other times it was a longer , more in depth conversation about the process of BMT, the drugs, the side effects and occasionally, with those I got to know better, it was about family and how they reacted, behaved etc. There were many different scenarios, although most children there having BMT had suffered cancer or leukaemia, some had rare immune deficiencies like Herbie. There were also many different family/friend scenarios and I realised quite early on how lucky we were.

Those who know us well know that we are incredibly lucky to have an amazingly supportive family. Both sets of parents live very locally to us and all four are very “hands on” when it comes to being grandparents. When we spent our three weeks together at the start of the BMT it was our parents who stepped up as interim carers, taking on roles and jobs they clearly had the credentials for having raised 6 children between them. We know they had some lovely times with the children but they also got the backlash of our absence and the emotional outpourings that were inevitable from three children aged 11 and 6 whose parents were away looking after their baby brother! It’s important to know that they were also dealing with their own worries about us as their children and obviously Herbie! We can’t thank them enough, even know we know they will play their part down as “just what we do”. Let me tell you, after talking to lots of people in the same boat as us it’s not what all grandparents do!
As well as having grandparents helping us we also had our siblings and their other halves. Between us we have 5 siblings, all of whom are married so we had a sibling team of 10. They were there helping us in a plethora of ways from collecting children from school to organising a deep clean of our house prior to Herbie’s release. Parcels, phone calls, Face Time, text messages, meals, treats, fundraising with girls for our local hospital The John Radcliffe, you name it, they covered it! Don’t forget that 4 of them (along with Dan) are running 10K for GOSH in September. Plenty of time to sponsor them … Just click below.
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We couldn’t do it without them.
Our extended family have also been fantastic! Aunties and Uncles, cousins all chipping in and helping out.
My mum also mentioned how much it meant to her and my dad (and I know that Dan’s parents would say the same) when people stopped and asked how Herbie was or were complimentary about the strength of our families.
We are incredibly lucky to have such wonderful people around us.

So on Day 62 we trickled along quite happily.
Herbie patiently awaited the children from his school who were walking back from the church via the fields behind our house. From his treehouse he waved like royalty as the school passed by shouting “Herbie ” and ” we love you and miss you” whilst waving frantically!
His face was a picture of happiness x

Other than that the day passed uneventfully, just more eating and drinking, shouts of “I’m hunjey” and plenty of Xbox and Skatooney. I would be worried about the amount of TV and Xbox he’s having at the moment but then I think it’s so hot outside it’s better he stays in and doesn’t get exposure to the sun!

So I’ve decided, in place of the daily bloods I will give you a daily BMT fact…

Today’s BMT fact.
A basic BMT costs in the region of £250,000. (And people knock the NHS!)

And I’ll leave you with a random BMT quote from Herbie…

Today’s random BMT quote from Herbie as we talked about the new cells growing and telling Herbie’s body what to do.

“so if I’d had Frank’s bone marrow (Frank is our cat!) instead of Ru’s do you think I would be walking on four legs by now?”

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