As we are at the end of the school year I have been doing some reflecting on Jack’s academic voyage to date. I realised that since he entered the education system he has had to have a fair bit time away from the classroom because of LCH.
In September 2014 I can clearly remember chatting to Mrs Rathbone who was the nursery class Teaching Assistant at Denton West End. We were stood in the out door play area and it was a ‘settling in’ morning for the children and for the parents to meet the staff. She was friends with Jack’s childminder Dawn so Jack knew her as they had been on days out together and stuff. I was telling her how over the summer he had started to be a bit fussy with his food, he was drinking a lot of water and that I had took him to the doctors and that the nurse practitioner had suggested it was habitual and told me to bring him back in a few weeks. I actually told her to monitor his drinking and not let him guzzle loads of water as we thought this was filling him up and putting him off eating. She agreed to keep an eye on him. It makes my stomach turn thinking back to it now. He had only completed a week of afternoons when I got the call from Dawn that set the ball rolling with the trip to A&E.
I am grateful that I had that conversation with Mrs Rathbone and that she and Mrs Miller took heed of what I said and were quick to report to Dawn that Jack had appeared lethargic and unwell. If they had not been on the ball things could have been a lot worse for Jack. When he was admitted to hospital he was severely dehydrated and required fluids. We now know this was because the disease had attacked his pituitary gland and caused a condition called Diabetes Insipidus. He takes medication twice a day for this now to stop him becoming dehydrated and possibly fitting.
Lee and I made the decision to keep Jack out of the nursery for the rest of the first term. When you first enter oncology land you get that absolute shits put up you about risk of infection, neutrophils, CHICKEN POX and so on. He also had a hickman line (wiggle) which is basically a plastic tube sticking out from near his armpit, with a direct tube right in to the jugular. Although this was kept in place with dressings, you are sent home with this blue plastic scissor-looking device that is called a ‘clamp’ and is to be used just in case the line becomes severed…..YIKES. All that was a bit too much for us at the time and as it was ‘only nursery’ we wanted him to stay either at home or in the safe and familiar bosom of his wonderful childminder Dawn.
Once we had got used to ‘the new normal’ he went back to school in the new year. His physical appearance had changed quite dramatically, he had gone from thin and gaunt looking to rotund with a round moon face familiar to kids on high dose steroids. The teachers were wonderful in helping him to settle back in. We were worried because a lot of the children had made friendships in the first term but the team at Denton West End were very good.
My only complaint really would be in relation to how the senior leadership team initially responded to the diagnosis. We requested a meeting with the relevant staff and our Macmillan nurse so she could explain about Jack’s condition and the risks and things they needed to be mindful of. She told them that a communication would need to be circulated to advise parents that a child in the school was immunosuppressed and that they needed to let the school know immediately if their child had chicken pox. Macmillan have a standard letter that schools just pop on to their letter headed paper and circulate. There was some resistance from leaders at first as they didn’t feel it was prudent to circulate and cause ‘panic’ amongst the parents. Our dear Macmillan Nurse Andrea was incredibly level headed and told them …….in no uncertain terms, that not following this guidance could result in a fatality. The letter was circulated.
I suspect other oncology parents will relate to the chicken pox anxiety. Frantic calls to the oncology ward or the macmillan team to check if you need to go in are common place. There was a number of occasions that the school called to tell me of a chicken pox outbreak and we just kept him off until it was clear.
Mrs Miller & Mrs Rathbone, thank you for helping Jack to settle back in to school after so much absence.
Jack was nearing the end of treatment when he joined Miss Landy’s class in reception. By this time he was well in to the routine of meds and was used to his wiggle. Miss Landy had actually gone to school with Jack’s uncle Mark and was really very lovely and keen to understand everything about his condition. Again we met with the team to discuss the risks and so on and she would call regularly with updates on illnesses going round or if Jack was under the weather. He grew very fond of her and was sad to leave her class. She had a little boy herself and whenever I spoke to her about Jack I could tell she genuinely cared about him and was putting herself in my place.
He got the all clear while in Miss Landy’s class and I feel he really came in to his own with his love of school while under her tuition. So, thank YOU Miss Landy, you helped to create some really strong foundations for Jack’s future.
Arguably, Year 1 is when school really starts to ‘matter’ in the UK. The kids start Key Stage 1 learning. Jack was lucky to have Mrs Farrell as his class teacher in this year group. Mrs Farrell was what I would describe as an ‘old school’ teacher. She was older and more experienced than his previous teachers. She had grown up children of her own and could probably relate to me on the level as being similar in age to her daughter as opposed to similar age to herself like the previous teachers. She really helped to bring Jack on with his Mathematical ability. He started to show a really flair for it under her tuition. He started with migraines in the January of that school year. She was very understanding and reported back what a difference it had made when he started to take medication. His concentration improved and his handwriting and so on.
We decided to move from Manchester to the Wirral when Jack had finished Year 1. I grew up in the area but obviously schools change overtime and so I spent hours reading OFSTED reports and asking opinions of other parents. We also had the challenge of not knowing exactly where we would be living. After a fair bit of deliberation we put the application in to Wirral Council and patiently waited to hear back. Luckily the school he applied for were splitting the year group and growing from a 3 form entry to 4 form so there was room in a class for Jack.
Jack joined class 2SK in September. Again, my ‘oncology parent’ anxiety was off the scale. His previous school and all the staff knew everything they needed to know. Would the new teachers be as understanding and proactive given he wasn’t actually ‘in the system’? would they take my request to meet them and go through his medical history seriously? Would they communicate with me?
I honestly didn’t have anything to worry about. From the head teacher, to the reception staff, they could not have been more accommodating and interested. The school is BIG, there are around 700 kids in there but the head new who Jack was and has made a point of being interested in him. I appreciate what a high-pressured job she is in and this personal touch is genuinely, really appreciated.
The school has an amazing communication system called ‘class dojo’ were the teachers can communicate directly with parents, none of these archaic letters. All schools should have it! It has really helped us to feel involved with Jack’s learning and also helps with reminders to ‘bring a tin in tomorrow’ or ‘wear your own clothes’ etc.
I think this system allows the school-home relationship to blossom if the parents want/need to. I know I have really enjoyed getting to know his teachers through it.
So that brings me on to the delightful duo of Mrs Keast & Mrs Sharp. The two of them job-share and take the class 2 and 3 days out of the week. They have it down to a fine art. Jack had a lot of hospital appointments during his first term in their class and they would always ask how it had gone. They were the first people to hear about Jack’s relapse, other than close family.
They were accommodating, they kept Jack in the loop with work while he was off. They didn’t let him slip, they gave him extra support for his SATs. They didn’t make him feel different. They didn’t make a fuss over him (but did not miss a trick at the same time). They let him explain. They saw when he wasn’t feeling well and would give me a heads up so I could come and check him out or bring him home (because he will rarely admit if he’s tired!) They read a book I sent in to the class to explain a bit more about what was going on. They have pulled him in from the playground if he looked tired. They have been AMAZING. As the year drew to an end they asked could they help to raise some money for the charity we support in Jack’s name. At writing the total is well over £1000! They’ve really had such an impact on Jack and on me. I was secretly hoping they would have him next year but, change is good. Mr Roberts, you have two pairs of seriously awesome shoes to fill….no pressure 😉
To all the teachers out there; don’t underestimate the impact you have not only on your children, but their parents too. You’re in such a privileged position and in many cases spend more time with our kids than we do. Your job is so pressured and I bet you wonder why you do it on occasion, but just know that parents like me are so glad you do. If you ever find yourself in the position of having an oncology kid in your classroom hopefully you will take the positives from Jack’s teachers to guide you.
I hope you all have a fabulous & well deserved summer break.