Dear Herbie

Dear Herbie,

I wanted to write to you to tell you about the choices we are making on your behalf. When I found out that I was pregnant with you almost 6 years ago I knew that , as you were already there against the odds, you were a fighter, a tough cookie and coming to us for a reason. You have shown that you are all of these things and so much more and we can’t imagine our family without you. For that reason we have decided to enter into a Bone Marrow Transplant for you to hopefully give you a new immune system capable of protecting you for the rest of your life and to put an end to the daily bravery you face.

It sounds easy…it won’t be my Small, it will be tough. Tough for me and for Daddy and everyone who loves you but toughest for you. There will be days when you feel so ill you will wonder why we chose this but one day soon it will hopefully become clear as you begin to feel strong. We have watched you get stronger every day since Christmas but you still have to endure daily iv’s, a plethora of oral meds and countless appointments involving  prodding, poking and blood tests. It’s not what we want for our five year old baby…you were put here for great things, they are still to come and that is why we have agreed to the transplant. You are amazing, such a trooper and we are always so proud of you and amazed by your courage and strength and your ability to still make us smile even on the toughest of days.

Transplant means at least 8 weeks away from home, it’s so hard to imagine being apart from Lily, Kitty & Ru for so long but mummy thinks of it as a ‘long term’ at school. We can do this. We will be with you every step of the way, I can’t give many 100% guarantees in life but one I can give is that we love you more than words can ever express and will do everything we can to give the chance of a happy, healthy and fun life.

So on Mother’s Day 2014, as I write this and recall the elation of my first Mother’s Day as a mummy to 4 in 2009, the devastation of Mother’s Day 2010 as I watched you taken from my arms by a paramedic, fighting for your life as meningitis threatened to take you from me, happiness of Mother’s Day 2011 to have you well and happy a year on, I find myself looking to Mother’s Day 2015 when hopefully these tough days will be a memory and we will be celebrating almost a year since transplant.

Be strong Small and I will be strong with you. Together we will be positive and get through this xxxxx
I love you and so does Daddy xxx
Hugs, snugs and kisses
Mummy
Xxxxxxx
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Mother's Day card 2014
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Naughty PICC lines, school, Buzzy’s and Kate Bush tickets

Another week has whizzed by with only a few notable occurrences , which is good as most of them have been positive.

On Thursday Herbie returned to school for the first time since November 15th 2013. It was almost like Christmas Eve in our house on Wednesday evening. The uniform was laid out for him just like the other 3, packed lunch made, book bag packed and a fruit snack selected. Herbie was so excited and insisted we made chocolate nests with mini eggs for all of his class to “make sure they don’t forget me” . I couldn’t believe that my big worry of him losing his place in his social group was his too.

Back to school at last!
Back to school at last!

Herbie was up bright and early on Thursday and dressed in a flash…it was so wonderful to see him so happy and eager and to watch the excitement of his class as he arrived in the line!
When I collected him at 1pm I expected him to be shattered but he was still buzzing and full of energy until his head hit the pillow at 7pm! On Facebook that evening I felt emotional as friends left messages such as

(I walk through the door). “Mummy I have good news Herbie is back at school!” (Bless) x

Like Louise. Off her own back I got Isla saying ” Mummy guess what was really exciting today…Herbie came back to school” She then went on to tell me about some medicine in his tummy and how they were jumping around together or something. I think they have all missed him.

Over the days preceding the school session Herbie’s PICC line had been getting progressively harder to flush and pressures on the pump during infusions were creeping up. It wasn’t looking promising. PICC lines have a shelf life, they don’t last for ever, some last a few weeks, others months but the last thing we needed was for Herbie’s line, which has been used daily since it was put in in December 2013, to need replacing.
His PICC line enters his arm and was put in under general anaesthetic, as he prepares for his Bone Marrow transplant he will need it replaced for a Hickman Line in his chest but we really want the PICC to last a little longer. Our Community nurse arranged for a visit to hospital to get some urokinase put in the line to unblock it before it became completely unusable. This meant no school for Herbie on Friday which made him rather cross but it did mean the line was ‘flushing beautifully’ when we left the hospital at 3pm and he also got lots of fuss made by the hospital teachers and TA’s and the Play specialists. He dressed up as a police officer and arrested one of our community nurses and threatened to do the same to his doctor! He was on fine form!

Arresting times at the JR Day care ward.
Arresting times at the JR Day care ward.

With the line working  things should have been quite uneventful but sadly one of his neck wounds appears to not be healing and to be a bit yucky. Not really the news we wanted, especially as it’s one of the older wounds. Fingers still firmly crossed it will resolve itself.

As we approached the weekend Herbie was aware that it was his weekend for his immunoglobulin replacement therapy.  He has it alternate weekends and his sister Lily has it every weekend. It involves small Neria needles being placed in the legs (although you can use the tummy but my two prefer the thigh) and an infusion of immunoglobulin being pumped in subcutaneously over an hour. This improves their immunity. Herbie has had this therapy for the last 14 months but recently has become quite emotional about it. Back in the summer he was given a pain relief device called a Buzzy which worked well when the needles are inserted and as the sting begins when the infusion hits the skin. Thanks to our lovely community nurses, both Herbie & Lily received their own Buzzy on Saturday via funding from the charity ROSY. They were so excited to get them and they worked so well. They work by distracting the nerves to reduce pain using vibration and ice pack wings.
Buzzy
http://www.rosy.org.uk
http://buzzy4shots.co.uk
So finally,  Kate Bush…one of her songs has been going around my head for days since the announcement of her tour in the autumn. I really want tickets!

Bertie by Kate Bush

Here comes the sunshine
Here comes that son of mine
Here comes the everything
Here’s a song and a song for him

Sweet kisses
Three wishes

The most wilful
The most beautiful
The most truly fantastic smile
I have ever seen.
You bring me so much joy
And then you bring me
More joy

Things are looking good…

A week has past since my last post.  So what has happened since then?  Actually it’s been pretty hectic (but thankfully in a positive way).

On Wednesday we went to Great Ormond Street Hospital in London for our immunology appointment and a CT scan. The visit appeared to be scuppered when our car decided to break down but amazingly the hospital sent a driver to collect us and arranged for one to bring us home so that was easily sorted.  Dan has been feeling pretty dreadful since that return journey, full of a nasty head cold and that has been a worry. Herbie really doesn’t need any more viruses or bacteria to fight right now.

Great Ormond Street Hospital is always a different experience to Oxford. I’m not talking about the medical care and quality of staff or anything like that. In Oxford we feel ‘at home’. We know where all of the departments are, we know how ‘things work’, we know the consultants really well and the nursing staff and the play specialists. They make us feel extremely special and Herbie is always treated like a celebrity which he loves!
GOSH is huge, bustling and still very ‘unknown’ to us. We know a couple of the staff members who we have seen on every visit but the majority of those we meet do not know us and it makes a difference. Anxiety levels for all 3 of us are always higher. This visit was no exception but it was different to usual. First up we were greeted by a researcher for the BBC who is making a documentary series about the hospital. I was given a radio mic and we were then filmed for the rest of the appointment as well as interviewed. Herbie had a cannula put in and blood taken, two of his least favourite things, and was super brave. Then he went to the scanning room for a CT scan of his chest and tummy. Finally we had an appointment with our consultant, Wasim, although he was actually not there so we met another Dr that we hadn’t met before. We were also introduced to a psychologist and social worker who will be supporting us through transplant. After all of the talking and procedures were complete we were taken to the Lagoon restaurant in the hospital for lunch, courtesy of the BBC.
Waiting at GOSH
The social worker gave us books for the children to explain transplant and being a donor. I read them and they are fabulous but they did make me emotional. It’s such a huge thing we are entering into and what keeps me positive is knowing that as a family unit we are strong but as individuals we are strong too. The question is when do we tell Herbie and Rufus what is coming up and how? It will be scary for them both.
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On Friday evening the phone rang at 10.20pm, it was from an unknown number and I knew it was the hospital. My heart was in my mouth and my heels were digging in during the split second before I answered the call. What did they want? Why were the calling at this time? What was so important it couldn't wait until tomorrow? What had the CT or blood tests shown?
Dr Porter's voice was calm and apologetic, he was sorry to disturb me, it was nothing to worry about…I relaxed…a little! Wasim at GOSH had decided to up one of Herbie's anti fungal medicines, it was showing minimal levels in his blood and so he would move from 4mls twice a day to 7.5mls three times a day! It was a big jump! Levels would be checked again in 3 weeks. On Saturday the community nurse, Morag, confirmed the change and also commented on the good news shown by the CT. There was apparently 'marked improvement' which I was thrilled to hear. Other good news came when Herbie had his dressings removed on his neck. The wounds were healing really well and no new ones were visible. Perhaps we were finally winning this battle!

This week has also seen us considering and completing Herbie's 'wish application'. It's amazing what charities offer, the forms are needing quite a bit of input from me but Herbie's ideas and drawings will make the basis of the application. I won't say more yet about his wish or the charity we are applying to but we will keep you posted!

As I type Herbie is extremely well and looking much like his old self and certainly behaving like his old self. He will have a visit to school on Thursday to keep the peer group links/social side of school ticking over but Victoria , his outreach teacher, continues to provide wonderfully stimulating sessions for him at home on a daily basis. So my mind now turns to the inevitable , the transplant looms. Another BMT parent once wrote to me saying " one of the hardest things is having to make your child sick before you can make them better" and I guess we are coming to that point. We have spent the last 4 months trying to make Herbie better and now as we finally seem to be getting there we will need to think about transplant and chemotherapy. Seems this roller coaster just came whizzing down one loop only to be faced by the uphill struggle of the next…

The case of the missing bed…

We have nothing but admiration and praise for the NHS and the amazing care and support we have had locally and from London. So the following story is not a moan or a whine, it’s just an account of what happened yesterday and we thought it was an adventure and typical of something run of the mill turning into something out of the ordinary which pretty much sums up this whole journey.

Yesterday Herbie had surgery on his neck to remove another (and hopefully the last) abscess on his lymph. It was all organised on Friday, all planned and sorted and straightforward. When we arrived at the hospital at 7.15am the ward seemed surprised to see us and asked us to wait. When we were taken into TDA we noticed Herb’s initials on the board but no other details. Everyone else had consultant, surgery list, ward etc.  As the first hours passed we watched the buzz of the busy TDA  (Theatre day admissions I think that stands for) as surgeons and anaesthetists hurried around carrying pink case notes and yellow consent forms that needed signing. We witnessed the anxiety of parents waiting for the moment when their child or baby had to go to theatre, nurses applying Ametop or Emla cream to small hands and wrapping them with the cling film and bandage so that the room became filled with mini boxers! Herbie was not amongst these, his PICC line means that anesthesia can be administered through the line rather than a cannula. Play specialists with beaming smiles carrying piles of ‘Where’s Wally?’books to distract small people from the insertion of needles to place cannulas, a plethora of iPads and ipad minis being charged to keep the boredom of the wait at bay.

Herbie , unlike the others had a different stream of visitors, first the usual weight, temperature check by the HCA, then the anaesthetist arrived but confessed to being unable to locate his notes, then a member of our consultant team arrived bearing news from a previous biopsy (all fine) followed closely by two of our lovely Community nurses who had just come to see what the plan was for the day & say hi! The surgeons came and told us we were second on the emergency theatre list and they would call him soon. Juliette, Herbie’s favourite hospital school teacher came in carrying a pot of felt tips, a superhero story and a camera and superhero outline on a sheet of A4. She had a quick catch up with him before reading him a story and taking his picture to print out to add to a superhero body he needed to colour in.
A TA from the hospital school also popped in to say hi and the community nurse popped back. The play specialist came for a chat and checked Herbie was ok about the pre op procedures, which he was.

During this time the other patients were changed into gowns, cannulas inserted and walked or carried by parents off to theatre and later their parents returned to TDA anxiously awaiting the return of their precious children from the surgeons knives. Hair was twisted, hands clenched, tears mopped up by scrunched up fistfuls of tissues. Then it was our turn. Herbie dons the gown, refuses to remove his jeans but walks happily down the corridor to theatre, he knows the drill, he isn’t scared now and both Dan and I manage this part much more easily than we used to. Kisses and hand squeezes take place and the doors to the anaesthetic room close on our sleeping boy…we head to the League of Friends cafe to get a drink and try to pass the time as quickly as we can. It’s midday exactly, thankfully he’s not been made to wait long this time.

At 12.30pm I buy our second cup of tea, we reckon on another half an hour at least based on previous surgery times. As I sip from the mug of tea I survey the hospital, bustling and busy. I spy the patients, released by their wards for respite in a cup of something warm from Costa. I spy the HCA from TDA, she’s looking in the Costa below for someone , I watched her flitting quickly from place to place, ‘maybe she’s looking for us?’ I comment to Dan. We decide to return to TDA anyway and wait there.

As we enter the doorway to Robins ward we see the HCA, “oh I’ve been looking for you two” she remarks smiling (a knot in my stomach…she’s smiling but she is looking for us, why?) , “he’s all done and he’s awake, we need to get him”. We grab our belongings from the TDA and head towards theatre. Dan asks me “shall we leave Juliette’s felt tips in Tom’s Ward when we get there? ” “you won’t be going to Tom’s ” the HCA comments. My mind spirals into a million questions and thoughts in that split second “why not?, what’s happened? Is he going to PICU? PHDU? What’s gone wrong?” As these questions swim around my head she continues “we are having trouble locating a bed so he’s going to Kamran’s ward…some parents worry when we say that (it’s the specialist children’s cancer ward)…there’s a bed free there.” The questions stop, I have no problem going to Kamran’s and we enter the ward, the HCA goes to get a nurse and we wait by his bed space. On her return she tells us we can’t have the bed after all, Herbie has TB which means he can’t stay with Kamran’s patients. Herbie doesn’t have TB but I’m not going to argue that point here and now, they have seriously ill children who need protected and I understand that. The nurse offers to take us to Herbie , who is awake but being kept in theatre. They won’t even send him to recovery despite him not actually being contagious.
Theatre snoozes
A rather grumpy boy greets us but after a rant and some calpol he snoozes whilst we wait to be allocated a bed on a ward. I look at the vast machinery, the cleanliness and watch the monitor as it beeps rhythmically telling us all that Herbie’s heart rate and oxygen saturations post surgery are not a concern. It’s 1.15pm
Candy crush addiction
We pass the time in the quiet white theatre playing Candy crush! Still no room allocated at 2.15pm. Herbie wakes again and asks for a wee, water, egg roll and to get dressed in that order. We sort it all.
Post surgery munchies

Ready to leave theatre
Finally he has a room and he can go, the nurse from Bellhouse Drayson looks very surprised to see him dressed and eating and off of the theatre trolley. We go to his room at 3.15pm and have visits by our community nurses and ID team consultants. Our lovely CN administers his ambisome iv and at 5.15 we head home! The case of the missing bed never really solved but hey if it had been this blog entry would have been a whole lot shorter and the day a whole lot less interesting!
Happy bunny back home

Medication , surgery and a “normal weekend”

So let’s talk medication…I’m not talking Calpol, Nurofen or Piriton (although I have all 3 of those too) but hospital prescribed medication of which my house seems to be full to bursting!

Community Nurses Equipment

First we have this little lot. This is the Community Nurse equipment and the iv supplies. Every night we charge the pump for them but literally this is their domain (although I have been known to raid it for steri-strips at some unearthly hour after Herbie’s first neck surgery!)

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Then we have the daily oral meds, our domain, given once or twice a day. Some need disguising in juice, others need a drink on hand immediately after and one is bright red, looks like blood and stains everything it touches.

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Finally our immunoglobulin replacement therapy kit, weekly for Lily, fortnightly for Herbie, a subcutaneous infusion that goes through the needles into their thighs over an hour. Again administered by us.

This weekend we have administered all of these things, some daily, some twice a day and some just the once over the weekend but amazingly it’s felt like a ‘normal’ weekend. This is our normal now. We managed a cinema trip, playing in the garden, visits to family & friends around all of this and it felt good. Now it’s time to pack a bag , taking the medical supplies and notes from the nurses with us, as tomorrow (Monday) we head back to the JR Children’s Hospital for 7.30am, Herbie is to be starved from midnight tonight and hopefully tomorrow morning he will have surgery to have the last infected lymph removed from his neck.
He still has healing wounds from the three removed just 2 weeks ago and lovely bright scars from the two removed 3 weeks before that! Poor Small, he’s had so much surgery, hopefully tomorrow will be the end of the neck lumps.

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Because I’m happy…

Don’t worry today you will NOT be needing your tissues, your mascara will not be running and hopefully you will be smiling throughout today’s entry.

What a day! Miles of smiles for young Herbster, and the rest of us ,mainly due to the kindness of others. Herbie had his second session with his teacher, Victoria, and showed the same enthusiasm as before (thankfully no fox suit today although he did bring it downstairs but was waylaid with a quick game of Candy Crush before she arrived). When she left just after 11.30 Herbie demanded lots of snacks as he had “been working doing lots of hard stuff” and he had half an hour to wolf them down before the highlight of his day was about to arrive!

If you have small children and you live in the Oxfordshire Area you may well already know Nick Cope. If you don’t you ought to and if you live elsewhere check him out on You Tube or google him. Nick writes & sings kids songs that adults love too, humorous and catchy. Herbie LOVES Nick Cope and you can imagine the excitement when he heard that he wanted to pay him a visit and sing a few songs for him in our house!

Listening to Nick

Nick arrived and Herbie was unusually quiet but as the guitar case opened and the guitar was tuned and the first chords played it all changed! He smiled his way through the first song, began joining in by the second song. He giggled and strummed his cardboard guitar and had a fabulous time.

Playing the cardboard guitar with Nick
Playing the cardboard guitar with Nick

How kind of Nick to pop in and make our brave little boy feel so special. He played his requests, chatted to him and even gave him a cardboard guitar and picture to keep. It was very special, 50 minutes came and went and Nick joined Herbie on the sofa with guitars and glasses on for his photo call.
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Once we had waved Nick off we shot out to The Shake Shop to round off a top day with Herbie’s shake treat, Aero mint! To help him with the numerous dressing changes and finger prick blood tests etc he has a a sticker chart. This time on completion he requested a shake shop visit.

What a happy day we have had, even the phone calls from Great Ormond street Hospital to discuss pre transplant investigations couldn’t dampen our spirits. Then to add an extra smile a message from someone asking if they could raise money to help make a difference in some way , supporting his hospital, nurses etc. What great people we know 🙂
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http://www.nickcope.co.uk check Nick out here…

“He’s not missing much…he’s only in Foundation”

Some things make me so angry that I really feel my head may explode. I think one of the most annoying comments during this recent bout of illness for Herbie is the one regarding his education. In September 2013 Herbie started Primary School. He was so excited, his new class opened a whole world of opportunity. He asked daily when he would get his first reading book, told me in detail each lesson in maths, phonics and made us proud with his eagerness to learn. He had seen his big sisters and brother attend this school, he knew the drill, he wanted in! His puffed out chest and smiling face as he first put on his uniform is forever imprinted on my memory. He is a social butterfly, when I ask every day at 3pm “who did you play with today?” He replies “everyone, I like everyone, they are all my friends”. He tells me about the Christmas play, his dream to be a sheep in it (?) and sings the songs he’s started learning. He brings amazing junk models home and pretty much hogs the Monsters Inc Sully costume on a daily basis.
By his first parent’s evening in November he is off school ill, he has had a temperature for 2 days. “He’s made a great start” his teacher tells me “he’s such a comedian too”. He is, Herbie loves nothing more than ‘having a giggle and making people laugh’. We often discuss his perfect comic timing! I tell her, he’ll be back soon. Couple of days off at the most.

Herbie hasn’t been back to school since November 15th 2013.

Apparently many people believe this isn’t an issue…it is. Maybe they forget that I myself am a Foundation Stage teacher. I know exactly what he is missing and I know he wants to be back at school. During his hospital visits he attends hospital school when he can. He cooks, makes an amazing lantern, practises his phonics, his numbers and plays drums and other instruments. It’s a wonderful resource, he loves Juliet his teacher. During two weeks in lock down in a room in Bellhouse Drayson Ward in the Oxford Children’s hospital, Juliet brings school to him. We both look forward to this hour of respite , for me I can leave the room and drink tea! For him he can capture a moment or two of normality. One morning when the doctors come round they comment on how down he seems, he won’t speak or get up off of the bed. Finally he whispers to me why he is so down. His answer is not what I expect. He doesn’t ask to go home, to leave the confines of the room or even to have a break from the endless oral and iv medication. He simply says “why didn’t the teacher come, I wanted her to”

Juliet is brilliant, she tells me that he is entitled to outreach teaching and offers to liaise with everyone and sort it out. Today, March 3rd, Herbie had his first session with his outreach teacher, Victoria. He greets her dressed as a fox. He runs eagerly to see what she has in store and for just over an hour, as I potter around the house , they laugh, giggle and learn together. My heart sings! “When will she come again?” he asks just ten minutes after she has gone. “I want her to come every day.”

School

So the answer is “yes he is missing vital things when he can’t go to school” , he’s missed his first Christmas production, his first Christmas Fayre, First world book day and most of all he is missing out on learning and the social world of school that he loves so much. If they had witnessed his tears last Friday after he was reunited with his buddies in the playground when he asked me “can I go back to school now?” And I said “not yet” ,perhaps they would not say “it’s ok, he’s not missing much” …

Fox