Egg-sacally what has been going on?

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Wow! Look at that number above. It’s shocking how close we are to a year post transplant and that I’m still writing this blog!

Since the last update we have had a few issues to deal with. I blogged previously about the tummy upset and recovery but you  may recall my last comment (in parentheses ). Well we headed to Easter optimistic of a healthy and happy time but those of you that have followed this journey from the start will know that our boy isn’t keen on the direct route (like his father) and prefers a scenic , often longer and more winding one!

So basically the upset tummy continued with very little desire to eat and intermittent tummy pain with some sickness. No real pattern, no fever and no other symptoms to get a grip on.  I began to worry that a GVHD diagnosis was likely. Herbie was losing weight too. This was a double edged sword. He’s clearly been over weight for a while due to steroid induced munching but as the steroids halved his constant hunger diminished and his weight dropped. When he started the BMT last May he was around 18 kg, he has been as high as 27kg. This effects his blood pressure (he’s still on amlodipine daily to reduce his BP)  and his fitness levels.

The first week of Easter break started and involved a lot of chocolate. The other three munched their way merrily through tons of the stuff but Herbie still has his in his room untouched. We had the family Easter egg hunt at Dan’s parents house , Herbie dressed as a sheep to collect his eggs ( why not?) and managed to collect a lot.  He smelt the pizza and cakes that were put out for the tea party  but was not able to eat anything bar a sausage roll. He had fun though and was full of energy and loved seeing his cousins as always.

The Easter egg hunt bags

Before Herbie & Lily were initially ill with their mycobacterial infections we spent lots of weekends walking in and exploring the woods around where we live. With Lily initially not being able to walk far and then Herbie it’s been some time since we have visited our favourite haunts.  Dan decided to take the girls and Rufus for a walk in the Wychwood Forest.  Immediately there was protest from Herbie! He was absolutely sure that he wanted to go and he was so enthusiastic that how could we say no?  It was decided that we would all go and that Herbie could walk a little bit and then we would sit in the car (Lily too if she wanted to) until the others got back.

When we arrived at the gate where we would start our walk I suddenly remembered that it was quite an uphill  walk to get to  our favourite spot and that day it was particularly muddy so I knew it would be  tough going.

We set off with lots of chatter and excitement but after a few minutes Herbie started to huff and puff and I realised that we would be back in the car sooner than I had anticipated!

I was so wrong! That boy has such stamina and determination. Yes he got tired, yes he walked slowly and yes it was tough going but he did it and we made it to the flatter part of the walk (with photo opportunities on the way!)

 

He did need to sit for a bit to catch his breath and have a drink. Then we walked on to the rope swing clearing.

 

Once there  he even got to have  a little swing! We had such a lovely time! Dan had to give him a piggy back  to go back to the car but he did brilliantly. He was absolutely shattered when we got home but we definitely caught a glimpse of our pre transplant life.

Although these positive things were happening Herbie still wasn’t eating much and continued to have diahorrea and we spent most evenings wondering what was going on.  On the first two weekdays in the Easter break Herbie had his gammaplex and Pamidronate infusions for his immunoglobulin therapy and bone density.  These infusions through his Hickman line take hours and end up taking most of the day.  Despite an early start at the JR It was almost two hours before the infusion started and when the boys (Dan & Herb) returned home they were tired and grumpy.  On a positive note though Dan bumped into Dr Kelly , who we haven’t seen for a while,  and he came to see Herbie on Day Care and chatted to Dan.  He’s such a caring doctor. Herbie’s weight was down again but so was his BP which was great.

The rest of the week was relaxed and Herbie seemed to be vomiting less but the pain in his tummy was requiring calpol at least once a day and he was waking to go the loo during the night even more frequently. The week ended with much excitement as the GOSH publicity department announced on their website that the third series of Great Ormond Street would kick off on April 28th at 9pm on BBC 2! So exciting as Herbie features in episode 1.  The excitement was short lived though as within days the schedulers changed the air date .

Then on Wednesday we headed to London to see Waseem with Herb and Lily after a particularly bad night with Herb who was up loads in the night with tummy pain. On arrival in London he promptly threw up in the car park and announced he felt better! We headed to GOSH feeling slightly anxious.

Waseem was joined by one of our BMT nurses Hayley. It was so lovely to see her. She was one of the loveliest nurses , always willing to listen and take time with us during night shifts.

Waseem seemed pleased with Lily’s progress and agreed to temporarily stop her immunoglobulin replacement therapy during the summer with a view to restarting in Autumn.  He showed Lily her recent CT scan images and explained them to us. Her lungs are still very abnormal but there was some improvement.  As her lung function continues to improve he is reluctant to stop any of the other meds as she still has cavities in her lungs which bugs would love. We discussed Herb and everything that had happened since our last visit, including the small lymph that was up just where he had it drained last year. It was decided to leave meds as they were right now.  Waseem said it was difficult to tease out whether the symptoms were gut GVHD or down to immune reconstitution  and the burden of micabacterial infection remnants. He didn’t seem overly concerned apart from the weight loss as he now weighed 25.9kg.  It was agreed to monitor and if there was no improvement in two weeks or more weight loss he may need to organise an endoscopy to rule out or confirm GVHD.  He explained that he didn’t want to increase the steroid (the usual GVHD treatment) because of bone density issues and also it suppresses the immune reconstitution again.

We headed to the outpatients ward on Safari for Lily to have bloods and bumped into Amy, another of his BMT nurses, and had a lovely catch up. Again, she was soo lovely during transplant & she also nursed Lily in Robin back in 2013.

Before we left we met with Cassandra and Rachel from the GOSH publicity team and Ash the photographer. We had publicity shots done and chatted to them all. Three lovely people who even got the kids a gift bless them! The whole programme thing is becoming more real!

We left feeling  hopeful that Herb’s tummy thing was an immune issue and would resolve itself. That was the last time to date that Herb vomited and  although the tummy pain seemed to increase over a couple of days and the restless nights too, suddenly, just as quickly as it started , it just stopped. Last week Herb announced on Wednesday (a week after the appointment) that he wanted breakfast for the first time in about 4 weeks. He’s now eating and drinking more, no diahorrea  and his energy levels are up and no calpol has been needed for almost a week. We are beginning to think Waseem’s hunch about immune reconstitution was correct. (thankfully!) On Friday his teacher met me to say ‘she thought he was in fine form!’

As I type this we are heading into a new week and one that will bring back a few memories. I will blog about that nearer the time.  However one milestone, other than 11 months post transplant, which we hit this week was the anniversary of the Rays of Sunshine wish from last year . Some of you will remember he had a wooden ‘treehouse ‘ .

Here he is on it a year ago pre transplant…

 

and yesterday, 11 months post transplant

 

He he still has some way to go to get his hair back to the longer length but he’s on his way. This milestone really made me stop and take stock of how far we have come.  In many ways this year has gone by in a blink of an eye. I was thinking of two people as I wrote this…

Angela D, who may not even read this, but who was my BMT  lifeline this time last year. She had been there, done it and got the t shirt and her words often consoled me on days when my brain struggled to process all of the BMT info being thrown at me. She once said to me

” I know exactly how you feel…everything runs smoothly then all of a sudden something sends you on a different path. It’s not easy but remember other children have experienced this before. Put your trust in the doctors”

I have always done that, I have always trusted them and will continue to do so.  Thank you Angela for your friendship (and happy birthday!)

.The second person is Sharon. Her son and daughter both need a BMT and she will be heading to GOSH with her son in June to start. She is in the same place that I was last year but I want her to take comfort that Angela was right, Herbie & I  have  experienced what her and Zak will and next year Sharon you will be wondering how you can already be close to celebrating a year post transplant. Stay strong people.

Finally, what a lovely Easter surprise Herb had in the post from the  lovely Hope. A card , letter and gift! Thank you Hope. Herb says he hopes you had lots of chocolate at Easter and he loved hearing from you again!

So time to sleep. I have no doubt tomorrow will be full of yogurt, chocolate milk, prawn cocktail crisps and Skylanders after school for Herbie as usual!  He’s getting there,  now if I could just get him to eat his flipping Easter chocolate it might stop calling to me from his room!

 

Oh and another thing…

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So it appears that my posts are like buses! You wait for ages and then two in one week! I realised that I missed out a few things in the last blog that I had wanted to talk about and also an update on Herbie is probably a good idea too. On Thursday I woke to a small face staring down at me  and a voice saying  “I want to go back to school, I feel better now.” We had agreed he wouldn’t go back despite him feeling back to normal but he was having none of it. Dressed for school and insistent how could we say no?  So normal service resumed. I went to the supermarket to get a few things and suddenly felt quite anxious that I was unable to get a signal on my phone. What if the school needed me? What if he got unwell? What if? I needn’t have worried. When I arrived at school at 11.55am he was there, beaming and full of beans. I had a full dissection of his morning and as he sat on the sofa drinking his chocolate milk and eating pretzels he piped up with ‘it’s Thursday isn’t it? Yippee! Fish and chip day!” I was so happy 🙂

Friday was a half day at school for the younger two, ending with an Easter bonnet/Hat parade. Herbie enjoyed creating his hat with big sister Lily and wore it with pride. The day just got better and better with a lovely bag of sweet treats from best buddies Lily & Sam in his draw and then he was chosen as star of the week which meant he got to bring the class bear home for the holidays. I thought he might burst with happiness!

My little Easter Bunny

We went back at 1pm for the parade and Herbie ran back into his classroom. He came out moments later leading his class , as star of the week, in the parade. His happiness evident. What a great end to his term! Today he has been totally on form, eating, drinking, playing & happy.

In other news, the BBC Documentary series about Great Ormond Street is closer to airing which means things are stepping up a gear. Catey and Hiral arrived with our footage. We haven’t seen the entire episode as we are not allowed to see the other featured children. As you can imagine we are also not allowed to talk about what is in the programme but I can say two things. I needed tissues to watch it and we are very happy with our representation. I hope that it will be watched by many ( I will post as soon as I know the exact air date) and  that it will encourage people to join the Bone Marrow Donor register and potentially save the life of somebody that finds themselves in a life threatening situation. I also hope that the immunology and BMT teams will be seen for the amazing work they do and the difficult decisions that they are faced with. Parents are hoping that they have every answer but with most PIDS things aren’t that simple. This can be frustrating for the parents but also equally frustrating for the medical teams whose sole purpose is to save lives. So many PIDS are newly discovered, extremely rare and outcomes are hard to predict. The GOSH publicity department have been in touch with us about publicity surrounding the episode. It’s going to be an exciting and strange time.

Herbie asked me about the blog today. He said “if you email the blog to my doctors then they wouldn’t need to see me anymore because they could just read how I am ” It made me laugh that he sees life so simply when his is often so complicated. One thing I have noticed is that memories of transplant are already fading and selective for him. He remembers some things so clearly and fondly. Certain nurses, special times when he got to do something fun. I’m so happy that he is forgetting the less happy times. The only thing he often remembers with a grimace is the weekly NPA “it was every Monday and I HATED IT!”

So we are ready to enjoy the Easter break, despite two days in the JR next week for IVIG therapy and Pamidronate and then the following week a day in London at GOSH. Let’s hope things are back on the straight and narrow for a while.  ( but don’t hold your breath 😉)

Up, down and all around

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

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

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

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

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

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

.

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

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

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

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

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

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!

 

When the smooth ride hits a bump…

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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!

Pumpkins, carousels and a little magic!

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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

Happy Mothers Day, Happy Birthday and WOW WOW, unbelieveable!

T+128

I have so much to write about that I’m not sure where to begin? So in the wise words of the King in Alice in Wonderland I’ll ” begin at the beginning and go on until I come to the end.”

Last Sunday Dan left for Wembley accompanied by my sister Charlie, my brother in law Joffy, Dan’s sister Lucy and our sister in law Wend and their solitary cheerleader , my brother in law, Mat. They were heading to the Sure Run to the Beat 2014 where they completed a 10k run. They managed to raise over £6,000 in sponsorship for Great Ormond Street Hospital Charity which was amazing.

Herbie’s Dream Team

With that success in the bag the week continued in a positive mode. Monday was Herbie’s IVIG infusion day which meant an 8.30am appointment at the JR in Daycare. The traffic was bad and we arrived almost 25 minutes late but the nurses reassured us that it wasn’t a problem. Herbie also needed bloods taken for his weekly blood levels, ciclosporin levels, amikacin levels and, this week only, he needed the first of his line cultures to check for a line infection.
Although we had arrived at 9am by 10am nothing had happened. As 11am approached a student nurse popped in to do a set of obs. I pointed out that we had another appointment with community nurses at home at 2.30pm (IVIG takes about 3 hours to infuse). Although the nurses smiled sweetly nothing seemed to happen! Herbie was beginning to get rather fed up and so was I , finally at 12.50pm the bloods were taken! Nearly 4 hours after we arrived! The Gammaplex went up. It has to be given over 3 hours with the rate increasing over time if tolerated. Herbie sometimes gets back pain and despite Piriton he got it this time.the gammaplex kept getting air in the line as it was so frothy and so the alarms kept going off and it took ages!

We finally left the JR at 4.45pm and were home for 5.30pm , after battling Oxford’s rush hour, and greeted by the community nurse Sarah who was setting up his iv’s!

Herbie has remained fever free since my last entry and this means that we are now 18 days at home. Doesn’t sound much but the amazing fact is that that is the longest time spent at home since transplant!

Back in January of this year Herbie turned 5. He was in the JR and had a blood transfusion on that day. He had wanted a new green maxi micro scooter but we didn’t get one for his birthday as he was so unwell. Finally, at the grand old age of 5 years and 8 months Herbie was able to finally take ownership of a brand new, green, scooter! Happy belated birthday to my gorgeous boy. He loved scooting around the village on it!

Happy birthday (+8 months!) Herbalicious

First scoot on the new wheels

However, as always he overdid it and got ‘tummy ache’ resulting in an hour of lethargy.
When Victoria, his outreach teacher, arrived he was not very responsive which was sad.
Herbie wasn’t the only one to have a late celebration. I finally got to use my Mother’s Day 2013 (no that isn’t a typo) voucher on Thursday and had a wonderful hour of pampering at The Junction in Witney. Happy Mother’s Day 2013 to me! I really needed that hour, it was a great recharge for my running on empty batteries!

As I type I can confirm that so far the line cultures are still negative for infection. Based on the fact that fevers have stopped that is hardly a surprise. The GVHD has resolved leaving his skin a tad blotchy (nothing new there!) and a little dry but nothing extra moisturising won’t cure. He is meeting fluid targets and thankfully hasn’t had an over night water bolus for weeks and no over night feed since his time in GOS. His meds remain unchanged but his bloods are looking much better again which we hope means that we are no longer derailed and are back on schedule.

HB 12.2
WCC 5.93
Neutrophils 5.16
Lymphocytes 0.30
Platelets 220

His HB and Platelets are fab, no transfusions for months, neutrophils & WCC back in normal range and lymphocytes coming back up nicely. Fingers crossed these improvements continue. Next bloods are Monday.

Herbie is enjoying the return of his outreach teaching. One hour a day again but this term he’s got a job share which is nice for him. New faces are always welcomed when you are home most of the time with restricted visitors. This week ,in keeping with his school theme, we made some soup. It was yummy!

Dan and I are tentatively thinking ahead. It’s still very early days to make plans but we have so many lovely treats awaiting us courtesy of lovely friends and family that we finally feel we could think about using. Tea and cake at Huffkins, meals at The Fishes, The Chequers Smokehouse (a recent addition from my lovely work colleagues), afternoon tea at The Randolph and a meal at Cafe Rouge. Hopefully fun times ahead at last!

Friday was the eagerly anticipated Kate Bush gig. As previously blogged a wonderfully generous member of my family had offered us tickets way back in the year and it’s been pulling me through transplant ever since. Last week it transpired that only one of us would be able to make it after all as Sam’s name was printed on the tickets and photo id was required. Obviously we were disappointed but Dan, knowing that I have been a fan since she appeared in the seventies said I needed to go. Sam had done all he could via phone calls etc to try to get around the restrictions but had hit a brick wall.
Dan decided to come with me but go to the cinema whilst I went with Sam to see Kate! Traffic was awful and we arrived late to meet Sam who had been waiting outside the venue for at least 45 minutes! He asked us to try to get in together although signs everywhere screamed at us to get the photo Id ready. As expected the guy on the door said no entry without ID and we explained that we were with the ticket owner. Sam showed his ID and we were in! Sam didn’t get to see her in the end and I was totally overwhelmed by his generosity and thoughtfulness xxx We had an amazing night, The nineth wave was amazing and we were treated to a night that overloaded our senses, made me laugh and (for the first time ever) made me cry ( Running up that hill just transports me back to transplant now). All I can say is WOW WOW WOW WOW…UNBELIEVEABLE!

So I end this blog entry , 128 days post transplant, in a very positive place and feeling like I am on the edge of the diving board, about to plunge into the next pool. Hopefully this one is full of warm, crystal blue water and we can wallow there for a while.

Taking the scenic route

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

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

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

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

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

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


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

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

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

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

Working with Juliet

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

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

GVHD

100 days and beyond

Today is T+105

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

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

HB 10.5
WCC 1.73
Neutrophils 0.95
Lymphocytes 0.29
Platelets 72

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

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

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

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

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

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

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

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

Should I stay or should I go now?

T+87/ 88/89

The last few days have been very busy. Days 87 & 88 were the new pattern of sleeping at the JR and leaving as soon as possible in the morning after the dose of TAZ. Herbie has been on great form and full of energy. During his time at home we have seen him dressing up, like he used to, in his fox outfit for renditions of “what does the fox say?”

He was actually ok about returning to room 5 of BHD every night. He was often greeted by notes from the play specialists.

He enjoyed these and I guess he’s really enjoyed the attention from the nurses, doctors and play specialists. He’s enjoyed watching his DVD’s and having one of his parents giving him their undivided attention. However, it’s not all great, he’s missed his siblings, evenings on the sofa singing and dancing and laughing. He tried to recreate it with the nurses and showed them his dancing and singing. His energy levels have been great and his laughter infectious!

T+88 was much like the previous days apart from whilst our nurse Maz was busy giving Herb his TAZ the doctor, Ralph , arrived to check him over. He seemed very pleased with him and said his bloods were looking good and CRP was now 7. He would be talking to Professor Pollard about when Herbie could go home. I returned home feeling optimistic. Hopefully not much longer in hospital. as usual the day passed by very quickly and before I knew it Herbie was returning to Room 5 and his Park view.

Dan was going back with him for the night and I dropped them before returning home. As I was driving back my  phone rang. It was Dan (don’t worry I was hands free obviously!) he called to say that one of the ID team, Dr Manesh, had popped in. Only that day we had been talking about how we hadn’t seen him for ages. Dan told me that he was pleased with Herbie’s blood results and that things were good. I could tell Dan was keeping something though, good news before bad? My instincts were correct…Professor Pollard wanted Herbie to do 2 weeks of TAZ to be on the safe side which meant this part time hospital thing would continue until next Monday!  (Almost another week). I can’t  begin to explain how angry and disappointed I felt. The summer holidays were supposed to be our family time after the 9 weeks at GOS but we had spent most of it in the JR. I felt like this was crippling us more than the actual transplant. I admit I went home and called Dan again to vent my anger. The tough thing is that we know and trust Professor Pollard, we assumed that this had all been done in consultation with our BMT team, who are ultimately our care team for the 6 months post transplant, and realised we would just have to get on with it!

T+89 : Our trip to GOS for our second outpatient appointment was today. I collected Herbie and Dan from the JR at 9.30am and we headed to London. I was quite excited about the appointment as Herbie seemed well & I hoped they would feel the same. We arrived with time to spare and ate lunch in the park by the hospital that we had spent so many hours in during the transplant.

Then it was off to GOS to book in & wait for ultrasound. This is one of Herbie’s least favourite things but we reassured him it would only be a quick one this time as he’d had two at Oxford already.

Not happy to be back

I should have learnt by now not to make promises. The ultrasound was a full abdominal one , it took a while and although he was unhappy he contained his frustration. “All done” the doctor said and Herbie started to wipe the jelly off. The dr went off and returned just as Herbie put his T-shirt back on  and dropped down from the bed ,announcing  he needed more pictures! This was enough to send Herbie into a rage. He refused to get back on the bed or remove his tshirt and he really kicked off. Dan lifted him onto the bed and he was kicked! I seriously have NEVER seen Herbie this upset. After the ultrasound he was not calmed down either.

Lashing out during ultrasound

The tantrum got worse and all the way to Safari Outpatients on level 9, including the time in the lift, Herbie was lashing out and shouting. It really was something I have never witnessed before.

Once  in the outpatients waiting room it continued, he refused to co operate with obs, his heart rate registered 165 and he was asked to calm down as this is not good for him. The lovely HCA realised he was fighting a losing battle and told us to go back out and sit down. He’d try again when he was calm. However the calm didn’t arrive. Dan was the target of the abuse and left the waiting room in an attempt to help him calm down. A nurse arrived to take blood, she also mentioned an NPA, which I advised her was his least favourite thing and would not calm him but make him worse!

She got the blood and much to my annoyance and dismay the other admin staff there thrust 3 (yes 3!) questionnaires in front of my regarding my experience today to complete! Herbie got a stitch from all of the yelling, he was in pain and very upset. Juliet & Sebastien, two BMT buddies were there for their appointment but before we could chat properly  Dr Robert, one of our favourite BMT specialist doctors, came out to call us for consultation. He was kind and calm with Herbie , offering him the bed in the consultation room to rest on. Finally Herbie calmed down and fell asleep.

The appointment went really well. He’s very pleased with how quickly the haemorraghic cystitis cleared as apparently it can be long and painful (although not dangerous). His bloods looked good previously and immunity was getting better. Last time we were there the engraftment bloods showed he is still 100% engrafted with Ru’s cells!  It’s time to wean off of the steroids and MMF, both suppressants of the immune system. Yippee, a plan was made. He asked why we were still in our local, we explained the decision made by prof Pollard. He said there was no need for the TAZ to continue & we could go straight home!

We had to go home via the JR for the iv’s and whilst there we had a call from Netty , one of the BMT clinical nurse specialists, confirming the TAZ could stop.  Maz came to tell us they had had the call too. The doctors were not happy that GOS had over ridden their decision but we decided to let them fight that one out. Herbie was thrilled to be finally going home.

We waited for Dan to get the car,

Finally we were home. It’s time to get some relaxation now. Herbie’s fluid target is reduced to 1600ml & things are looking positive but wow, what a headache Dan and I suffered that night!

This BMT malarkey sure is exhausting!