Do we know those people?

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I find it quite bizarre that it’s been almost 500 days since Rufus donated his cells to Herb. I guess that watching it again on the television made it feel like yesterday. Things have been ticking along nicely since school ended for summer and we are all determined to make the most of the holidays whatever the weather.

On Wednesday last week we had a check up appointment at GOSH. This was our first appointment since the programme aired and was the day after episode 2 was transmitted. To be honest we joked on the way to London about Herb being a celebrity but I don’t think we had any idea what things would be like when we arrived!

First of all we were greeted by a large poster of myself and Herbie at the entrance to the hospital! Although we knew it was there (as a friend had sent us a picture)  it was still surreal to see it!

 

Herb, cheeky as ever, suggested he should cover my face as he’d done most of the hard work in transplant! Finally he agreed to pose with me too!  As we left the entrance we were greeted by numerous people (none of which we knew) who told us that they had watched the programme and which bits they had enjoyed and also how great it was to see Herbie looking so well. Herb enjoyed a few high fives with strangers and seemed to love the limelight.

Once in Safari Outpatients we were greeted by Louise on reception who asked Herb for his autograph, she was also in the programme so we asked for hers too! 😂 We also bumped into some BMT friends and Herb enjoyed some table football and iPad time with Ryan (who celebrated a year since his transplant this week.

One strange thing about going through transplant is that you meet lots of BMT parents and you see their children through the windows of the rooms as you walk through the wards (especially in Robin Ward as you go into Fox Ward daily too to the BMT kitchen and milk room) and you hear daily updates about them from their mums and dads but the children don’t ever meet as they are isolated from each other! I used to tell Herbie about the other children every day. He would often ask how Jacob, & Seren were or whether Mason was having a bath when I went to get our bedsheets or if I knew which game Sebastien was playing on his console. He would ask Helen, his teacher, w hat Milan was learning with her and ask me if he was building Lego. This curiosity about others who have had or are having BMTs continues. I often update him on his BMT buddies, he knows Jacob is starting Secondary school in September, that Seren is doing well  and that Sebastien lost weight like him and needed supplements. He feels sad for baby Jack (as Herb calls him)  when I say he’s back in GOsh. He’s cried about Mason and more recently over Milan and he’s shown a little bit of the green eyed monster when he learnt that Ryan had had his lines removed. It’s a strange thing being part of the BMT family. So for Herb to get to see Ryan and chat was lovely.

As we waited for our turn to see Waseem we saw many of Herb’s BMT consultants (Dr Robert Chiesa and Dr Juliana Silva ) and BMT nurses and they came to chat and say well done on the programme which was lovely. A lovely couple chatted to us, they were there with their young daughter. It seemed that they had watched us in the programme too. They thanked us for doing it and said it had been helpful to them as they were going to transplant too and were, understandably, worried. Dan told them about this blog, I hope they found it and wish them all the luck in the world.

Herb was weighed and had his height (114.8cm)  and BP (105/69) done. His weight had dropped again , 9 weeks ago he weighed 24kg (although it was really 23.6kg without his hoodie but Jinhua let us put the hoodie back on ) , this time he was 23.4kg. The day before we had seen a dietician at home at the request of Waseem.  We discussed what Herbie ate and she plotted his height and weight. Her weight chart showed that he was just shy of the 75th centile and she felt he wouldn’t be able to gain the weight that GOSH wanted him to as boys don’t put much weight on at this age and if he did it wouldn’t be rapidly. She had sent this information to Waseem. He made it clear that he was still worried about the rapid drop in weight and the fact that he was still losing. However, he also decided that there was a risk in doing an endoscopy to check for GVHD & a risk in dropping steroids so we agreed to tentatively drop the steroid and watch carefully. The drop would be from 5mls daily to 4mls for two weeks. If this was tolerated we would drop to 3mls for another two weeks and should that be ok he would hold the steroid at 3ml and begin to wean ciclosporin again. We felt these were sensible steps. The last CD4 count was 80 which is very low for a year post sibling transplant even with steroid and ciclosporin still in place. However Waseem reassured us that these are ‘just numbers’ and that the fact he’s been at school and stayed well etc was a good thing. He felt that his thymus was ‘feeling rather insulted’ by the chemo, micabacterial infection and meds but that it would be ok it just takes time. We do want his CD4 count back up before the winter though to protect him. Bloods were taken to see what was happening with his counts now. Results should come next week. Fingers crossed.

We left outpatients and headed to Safari Daycare to get the bloods done. People smiled at us and we’re very friendly. I saw Keano (also featured in the programme) and his mum in one of the isolation rooms. Professor Persis Amrolia stopped to chat to us about the programme, asking Herb for his autograph and saying he thought it was a good insight. I felt quite pleased that he cited certain things we had said as ‘insightful’. He is such a lovely man.

Then it was time to head to Robin Ward in the hope of seeing a few familiar faces. Herbie was very hopeful that Rehka, Amy or Ella would be there and he would have loved to have seen Maxine or Lucinda or Holly or any of his regular nurses/HCAs. We chatted to Nikki and then the nurses working popped out to see him, familiar faces and all so happy to see him. Sadly Rehka had worked the night shift and no Amy or Ella but he enjoyed catching up.

I also got to catch up with Sharon, Zak’s mum. She is currently in Fox Ward with Zak as he is having his BMT (10 days post transplant as I type) . Herb got fed up of the adult chat though and left the ward and ran to the lifts! So it was hop back to The Lagoon and then home.

So the steroids are currently dropped to 4mg daily and we are watching carefully. Herbie is enjoying the start of the long summer break. We created Summer’s Bucket List. A list of things we all wanted to do before summer left. It’s been such fun so far, after the last two summers off illness and hospital admissions we have everything crossed that 2015 might be better…it’s starting well! I’ll leave you with some of the things we’ve done so far and a quote.

” Aah, summer – that long anticipated stretch of lazy, lingering days, free of responsibility and rife with possibility ”

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

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T+266

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

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

 

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

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

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

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

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

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

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

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

 

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

 

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

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

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

T+212

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

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

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

Christmas 2013 with Claus McJingle

 

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

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

Reflecting on the journey so far

T+154
We have been free of Amikacin and on the reduced steroid dose for over a week now. It’s been a reflective time in our household. On one hand the sadness of knowing that Herbie and myself are approaching the anniversary of the date when school life stopped in its tracks. Thus leaving a very sad 4 year old unable to continue with his Reception class friends. A boy who embraced his new roles as a primary school pupil, a member of Peach class etc was suddenly left on the other side of the glass looking in as his peers continued on to each milestone without him. He’s missed numerous birthday parties, his first nativity, his first school disco, his first school fair, pantomime trip, sports day and too many other things to list. Memories were made for his friends, photographs taken, experiences gained but Herbie has had a very different year.
It’s been the same for me. Those who have known me a long time know how much I love being a teacher. The last few years have been tough as I wrangle with guilt of being unable to commit to a whole year with my class to be at home with my ill child. I too have missed many of my favourite things about school, about being a teacher, about being part of a team.

This post is not actually about sadness though, it’s about reflection. Despite what we have missed I think all of us are able to look at this from a different perspective now…how close we are getting to having parts of our life back. We are all feeling like the bulk of this behind us.
This time last year we were about to go on a small UK Holiday to make up for the awful summer we had had with Lily being so ill and on daily iv’s. The holiday was an amazingly happy time for us all. We came home refreshed, happy and almost carefree!

We have always liked the simple pleasures in life, no great need for exotic travels, filling days with one adventure after another. For us being together is most important. So that is what we are looking forward to this half term. Yes we have two hospital appointments in that week, yes it’s unfortunate but we are also going to be at home together which we treasure.

Herbie is slowly making progress. I am happy that stopping the Amikacin didn’t cause a reaction and the reduction in Prednisolone is being tolerated too. We were advised that we could stop potassium supplements last week. I chose to wean rather than stop completely. Bloods are taken tomorrow and we shall see what they show. Last week the blood results were good. Things are going as well as can be expected and Herbie is happy.

School is still an issue for him. He so desperately wants to return. He asks on a daily basis how many more days until he can go back! He is working hard with his outreach teachers and this week it was arranged that he could go to school at the local Hub. This means actually going somewhere for school. He still isn’t mixing with others but it’s a change of scenery and opens opportunities for things like cooking and larger art projects.

Announcing his arrival

Our story was in the local paper again. I think that is the last time we will do that. The girls have mixed feelings about it especially. The boys love it though! It was a nice article and made the front page.

I was shocked by the level of interest after the article with numerous calls from local radio stations and women’s magazines. We are not following any of these up though.

This week we had our annual flu vaccination. I am not anti vaccination at all and really don’t want flu as I know it can be dreadful as well as life threatening for certain groups ( namely Herbie and Lily!). This time I was concerned about whether Herbie should have it. I know it’s not a live vaccine but I asked Waseem and various other medical professionals before finally believing it was ok. I didn’t let the children know until we arrived at the surgery what we were doing. Thankfully there were only a few complaints.

A quick thank you to Emma for a lovely parcel for Herb and the gang last week.
She is so kind, a fellow PID sufferer, who herself has been quite unwell recently but always thinking of others. Hope you start feeling better soon Emma x

So as we head into the last few months of 2014 it will be important to protect all of my family but particularly Herbie. Simple pleasures such as a large family gathering for Guy Fawkes require a little preparation to ensure that we can go. Herbie is so excited about the prospect of a family gathering with his cousins, it’s been quite a few months since the last one in March. Fingers crossed that things continue to go well and all of the Taylor Clan stay healthy.

We can now turn our minds to Christmas and the children’s birthdays and hope to replace some of the sadness and disappointments of last year with smiles, happiness and joy. The children hope Elf McJingle will return and Herbie is also thinking of other things returning… He said,” I will even have lots of hair by then! ”
I think he may well do!
🙂

Christmas 2013

Questions, questions, questions… And the answers?

T+143 : First immunology appointment post transplant

So as those who have been reading know today was the day we officially transferred back to immunology and Dr Waseem. It was also the day that we hoped for some good news about meds, weaning and progress. I know , I know …you are probably reading and thinking why did she build her hopes up, why did she put so much pressure on the appointment. Well I can’t answer your questions but I can tell you the answers that I got for mine…

We arrived in a rainy London in time and headed straight to the hospital in good spirits.
The waiting room in Safari Outpatients was almost empty! This was a complete contrast to to the heaving masses there 4 weeks ago! The bad news was that I overheard the people behind the desk saying that they couldn’t find any of the doctors that were supposed to be there!
We met Hiral from the BBC crew and had a catch up and then the smiley baby Jack with his lovely mum and dad came in too.

Herbie went into be weighed with Joyce, the HCA, and he was very amusing. Joyce is always funny with him and today was no exception. His weight continues to rise (driven by steroids) and he’s also grown in height! His blood pressure was coming in stupidly high with the electric pump but after I reminded her that he needed a manual BP machine for a more accurate result and so she got one and his BP came down to a totally normal rate!

Waseem called us in and finally I got to ask my questions!
He was pleased with how he looked and his previous bloods. He explained that his counts are looking really good and that he is still 100% engrafted. I asked if we could still plan for him to return to school in January and he said definitely, maybe even sooner! This was music to my ears.
We discussed meds. I raised my concerns about the long term use of Amikacin and he agreed and decided we would stop it as of today! Just like that, one iv down! Whoop whoop! I pushed my luck…how about the other one? Would we still need iv’s by Christmas Day ?
Waseem explained that they needed another CT scan to check the lungs and a scan of the liver/spleen to check for fungal lesions. He would arrange for December and if all good he would stop Micafungin before Christmas.
Prednisolone is to be gradually weaned again, MMF weaned from November. Ciclosporin is a little way off yet but that’s fine.
Waseem also explained that they are still investigating our genetics and trying to work out what happened with Lily. Dan had to give more blood for their studies. Whilst we waited there for Dan , Helen, Herbie’s teacher in GOSH, popped by. He was thrilled to see her.
Then we left and headed back to Robin Ward for the first time since we left in July.

It was odd going back there after all of these weeks. We spent almost ten weeks there, calling it home. In the grand scheme of transplant we were one of the lucky ones, some dear friends are still there getting over daily hurdles, some came home without their babies.
Seeing the familiar faces was lovely, David let us in, Maria met us at the door of Robin Ward and then Amy, Lucinda, Maxine, Rose & Rosie appeared. All were full of hugs and smiles and were happy to see us. Maxine got her phone and called Rehka as it was her day off and Herbie chatted merrily to her. It was lovely to see his smiling face light up at seeing them all and hearing Rehka’s voice x

Herb on the phone to Rehka and with Amy.

So we left London and headed home, knowing we were starting the next plan and returning in four weeks to discover our next move xxx
Remember , remember the 5th of November, gun powder, appointments and what?