Category Archives: foundation stage

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?”

image

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

image

image

image

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!

image

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.

image

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.

image

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
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
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.

image

We waited for Dan to get the car,

imageimage

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!

HO HO HO …it’s drawing nearer

T+54

I want to start the blog by talking about community tonight.
This whole transplant journey to date has shown me that community spirit is still very much alive out there. So many things over the last few months that I have written about here in the blog that have really amazed me. North Leigh School super hero day…what a thoughtful gesture to celebrate my brave boys whilst the children have fun and learn and raise money for GOSH. The school really have supported our family so well prior to and during BMT. They have looked after Lily, Kitty & Rufus, valuing them and supporting them and ensured Herbie has always felt part of the school despite not properly attending since November 2013! The Skype sessions with his class, the post and books sent, gifts from teachers and teaching assistants. The community spirit extends beyond the school, fellow Nor Lye residents donating money to the Dream Team from prize money for winning races to best scarecrow. The net goes wider… To my school community. Witney Community Primary staff have supported me through this, making it easier for me to dedicate my time to my family but giving me the space to return, the parents have sent messages of support and gifts to Great Ormond Street, one even plans a Super hero day at her nursery to raise money for GOSH. BUT the net goes wider still…
This morning I receive a text from Herbie’s wonderful outreach teacher telling me that she was at Blake School in Witney watching the Y6 class do their end of year play. They chose 3 charities , one being GOSH , to raise money for and named Herbie as their reason for the choice! Then I receive a message from a friend and fellow FS teacher at the same school saying they also want to do a superhero day next week too , all proceeds to GOSH! I’m overwhelmed by everyone’s thoughtfulness and support.

I headed back to London this morning, arriving in time to go through the discharge talk with Rehka and Dan. Quite a lot to take on board there! Then there was the meds to prepare and administer.
Herbie was thrilled to see Rehka.

Rehka and Herbie
Rehka and Herbie

They had a real giggle today.
image

Dan left to go home briefly and watch the girls play leaving Herbie to enjoy his post!

Thanks Lily & Sam for the brill books and room decoration
Thanks Lily & Sam for the brill books and room decoration
Thank you Harry!
Thank you Harry!
Thanks Donna and Richard.
Thanks Donna and Richard.
Thanks Rachel, Ade, Sid and Archie.
Thanks Rachel, Ade, Sid and Archie.

He doesn’t have one, he loves the Mixel and it’s all brill (including Dan and I’s treat.)

Thanks Jo, Richard, Elsie, Meg and Seren!
Thanks Jo, Richard, Elsie, Meg and Seren!
News from Floss!
News from Floss!

Jess was his teacher again but Helen popped by with his learning record of her time as his teacher.image

image
Herbie was quite sad about the possibility of not seeing Helen again and promised to look for her when he comes back for clinic.

The bloods were in
HB 103
WCC 12.12
Neutrophils 9.85
Lymphocytes 1.45
Platelets 160

Kidney and Liver functions improving daily.

There was the obligatory walk to the vending machine to purchase steroid hunger foods.
image

There was also some superhero action.
image
image

Sarah , one of the HCAs , looked after him tonight. She also looked after Lily this time last year!
image

After our late night Skatoony episodes Herbie escaped onto the ward! He was hilarious and loud!
image
image
But ended up with tummy ache again from running about!

A full tummy and over 2000mls of fluid drunk meant he felt asleep immediately.
I did his 11pm meds and now I must sleep! One of the nurses, Emma, went on holiday today, she left him this note!
image

Tomorrow is another day closer …
HO! HO! HO!
I just can’t say it! Fingers crossed xxxx

“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