Alfie Jones

Alfie’s Story

So Alfies story strap yourselves in it is a loonnng one and one we haven’t actually yet shared in such detail! But now Alfie is a fully fledged Junior JDRF ambassador (ooh get you sir!) Something I 100% knew he would want to become after learning they existed and so proud of him for it. It only seems right to do so and raise awareness for the relentless s**t show that is 🥁… Type One Diabetes! 💉🫶🏻

Alfie was diagnosed with type 1 Diabetes days after his 6th birthday. We noticed he had lost A LOT of weight, he was always extremely tired, hungry all the time (and by hungry all the time I mean eat a whole roast and still be starving after hungry), thirsty all the time again this was to the extreme nothing would quench his thirst and he used to get so frustrated because of it. Because of the extreme thirst and extreme tiredness he had also started bed wetting at night which he would get so upset about and not understand why he didn’t wake up. He had moments of being extremely lethargic to the point he was almost non responsive which I put down to the being tired (but I now know is actually be a symptom of either extremely low blood sugar or extremely high blood sugar and Ketones in his blood) and then would seem not 100% himself but ok. 

I went to bed one night thinking this really is not right and started looking on good old Google at all these symptoms when stumbled across type 1 diabetes which was saying to be aware of the 4 T’s

• Tired
• Thirst 
• Toilet 
• Thinner 

I thought to myself this is so Alfie at the moment and showed Jonathan. I said I am probably being a bit dramatic here but please read this and tell me if you think this resonates. He agreed it did. I then continued reading thinking to myself this is actually some really scary stories here and thought well it can’t be diabetes he is 6, healthy, active, not overweight, doesn’t eat loads of sweets. I was not educated at all in Diabetes I didn’t  even know there was such a thing Type 1 Diabetes due to your pancreas stopping working existed or due to a lazy broken pancreas as Alfie and I say. I was unintentionally ignorant  and had always associated diabetes with diet and lifestyle choices. I then said to myself stop being silly and just call the doctor tomorrow it is probably an infection or virus. Well I soon realised I was actually very lucky to have stumbled across this and have it eating away in my head giving a horrid gut feeling otherwise I may not have been lucky enough to still have my little boy here with me today. But lucky for us he is still here fighting everyday to live a ‘normal’ life. Something I realise how much we take for granted. 

The following morning which still seems like only yesterday I phoned our Surgery and spoke to the receptionist listing off all of Alfie’s symptoms. The Dr phoned me straight back (shout out to Dr Manning at Burwell Surgery best Dr out there that I can never thank enough!!) and said can you and Alfie come up to see me straight away. We went up and he had a chat I mentioned I came across T1 and probably sound like an over cautious parent but he has everything they mention and something in my gut was telling me it was going to be this. Dr Manning tested Alfies blood sugars were off the scale not giving a number on the monitor just Hi. He then tested Alfie’s urine and again it showed off the scale high ketones. He looked at me and said you are not being dramatic you are being a concerned parent and have done the completely right thing calling today. I am sorry to say but think you are right and we are looking at Type 1 Diabetes. Dr Manning phoned the children’s ward at Addenbrookes explaining his findings. He turned to me and said you need to get to Addenbrookes ASAP and go straight into the children’s Emergency care room the nurse will be there waiting for Alfie. I remember my stomach sank knowing this was serious and not something we could just be sent off with some medicine for. He then said to Alfie and I you need to get there within the next half hour straight there and ask for someone to bring Alfie an overnight bag up trying to make this exciting for Alfie saying we would likely be able to have a sleepover with the lovely doctors and nurses. He then said If you think it will take you longer I can call an ambulance to come to the surgery and take you both in on the blues and twos. Alfie’s eyes lit up at the sound of this with an oww coming out of his mouth saying it is fine I have got the car. As an NHS worker myself I knew pressures the NHS were under with COVID and the extra need of free ambulances and as much as Alfie would have loved that ride someone else needed that ambulance more. Dr Manning said is that ok I understand this is a lot to take in. I looked at Alfie grabbed his hand and said yep we can do that can’t we. Alfie smiled and nodded at me. To be honest I didn’t know if it was ok had no idea what was happening nothing was going in It seemed as though everything went silent a muffled sound in the background and I then looked at Alfie looking at me for reassurance and off we went to the Hospital. 

Gosh so dramatic reading that all back!! But it is very serious and vital part of Alfie’s story as if Google hadn’t flagged up T1, I hadn’t then got the gut feeling and Dr Manning hadn’t taken me seriously Alfie wouldn’t have got to the hospital in that short period of time and Alfie would have gone into something called DKA a life threatening complication of T1, where your blood turns acidic and organs begin to shut down. This is something we haven’t yet and don’t ever want to experience.

We got to the hospital to be honest I don’t even remember the journey just remember driving thinking I have got to get him there looking back at Alfie making sure he was ok. He was loving life in the fast lane in the back of the car saying I feel fine. We parked up and quickly got into the paediatric emergency department where the happiest and smiliest nurse was there to greet us. We got taken into a room and Alfie got comfy in the bed. They popped a cannula into Alfie and took some blood samples he looked at me nervous as he hated the sight of his own blood at that time he would go into panic mode thinking whatever part of the body that was bleeding was going to fall off any second in that moment… not a great start for someone who was going to have to be testing their blood glucose levels for the rest of their life! We joked so much once we were in hospital and laughed a lot. I think that was our way of coping and we both felt safe and everything was going to be ok knowing we had all the pros around us. 

After the whatever number blood test my little pin cushion had, had he looked at me smirking saying mum I don’t think I am scared of blood anymore. We both started laughing and I just thought my boy you are something else. Alfie then said he was hungry but unfortunately wasn’t allowed to eat anything until his blood results had come back and the doctors knew what we were looking at. We chatted about what Alfie’s friends would be doing at school and the fact he thought it was weird to think his friends were there and he got to miss a day. 

The consultant then came in and sat on Alfie’s bed with him she had brought him a present to unwrap it was a lorry with little racing cars in he was chuffed to receive it. She said so it is what we thought and he is Type 1 Diabetic his bloods and ketones were very high and they needed to connect him to a drip full of insulin to try to bring them down to prevent him from getting extremely poorly. The doctor reassured Alfie that once they came down she would bring him some lunch to fill his little tummy. 

She then went on to explained that once they had come down enough and he had, had a chance to eat Alfie would be moved to the children’s ward where he would have to stay for a few days but that it was nothing to worry about as they were all very nice and had lots of fun things to do up there. Alfie began to get nervous and said he didn’t want to sleep there on his own but was reassured that he wouldn’t be alone and I could stay with him.  

I asked the doctor if there was anything we could have done to prevent this and she confirmed that it was an autoimmune diseases and to do with a gene he had and nothing we could have done would have prevented it. Almost like a ticking time bomb waiting to rear its head the first chance it got. 

We were finally moved up to the Children’s ward where we were met with more lovely Care assistants, nurses and doctors who helped Alfie get comfy, brought him toys to play with and even a PS4 for the side of his bed he was in his element!! 

Alongside the doctors and nurses were the JDRF charity not only a wonderful charity searching for a cure for type 1 but a charity that are so supportive of type 1’s and their families. One of the first things on the ward Alfie was given was his JDRF Kids sack in hospital where he got a ton of information, the most wonderful storybook explaining type 1 in children’s language and the best thing of all his Rufus Bear, a bear with patches on his body for Alfie to practice his insulin injections when he built confidence up to do so. 

The doctors reviewed Alfie’s bloods and said they were coming down nicely firing numbers at us which at the time meant nothing to us but we knew it was the lingo we had to learn. We had a Diabetic Educator come up and meet us (the amazing and lovely Cliodhna who has been a part of this journey ever since). She gave Alfie an Insulin pen which she said he would have to use every time he had Breakfast, Lunch and Dinner, a finger pricker, lancets,  glucose monitor and Ketone monitor along with a shed load of information for us to read through. Cliodhna said we were not to worry for the rest of the night as we were in safe hands, the doctors would be doing Alfie’s insulin for meals and throughout the night and she would be back to see us the following morning. The staff in the hospital were coming and checking Alfie’s bloods every 2 hours day and night and giving him extra insulin (known as corrections) as required. 

As promised Cliodhna was back the following day with lots more training and explaining what we could expect going forwards. She explained the two different insulins Alfie was being given and when the nurses were giving it to him and how they were working out the amounts a complete minefield. It all still seems such a blur looking back and seemed so much information to be taking in I just thought we will never get to grips with this. 

During Alfie’s hospital stay he met other poorly children some who were being diagnosed at the same time as him and others who were in for different reasons children of all ages all of them sat with smiles on their faces chatting away whilst us parents looked at each other feeling helpless full of fear and worry thinking how strong our little people were.  

After the shock and numbness of my little boy being diagnosed with this cruel disease and the thoughts of how are we going to get through this. I sat and watched him pride filling my heart whilst he was walking around with the doctors wanting to make sure everyone else was ok when he was actually just as poorly himself. One of the doctors came over to me and said I think we have a little NHS worker on our hands here. I firstly thought my god what an absolute trooper and inspiration. Then also what a great age to be diagnosed (if there ever is one) no judgement, no why me, no poor me, all the children being so lovely to each other and he was just like ok let’s get on with this. All at the age of SIX I think partly because he wanted to just get the hell out of there as he was supposed to be joining Exning football club that week!! 

Over the next couple of days Alfie was becoming a lot more comfortable with having his finger pricks and injections. Alfie began wanting to have a go at doing them himself. I went to say let’s wait a little while but the nurse jumped in and said yes let’s have a go together he got Rufus bear out and showed Alfie how to do it first and Alfie also had a go of an injection on Rufus. 

Since the day of diagnosis he was fascinated in how and why type 1 diabetes comes about and most of all taking the utmost pleasure in telling everyone it is not because he ate too much sugar and that he actually at times needs to eat sugar to help keep him alive. 

 A day later We met some more educators and a play therapist who took Alfie and some other children off to the playroom for some music and dance. In this time the educators went through when to test blood sugars and why, when to test Ketones and why, how much background insulin to give (this was a slow release insulin know n as Levemir  given to him at bedtime and first thing in the morning to help keep him steady throughout the night and day), how much insulin to give at mealtimes (this was the fast acting insulin given 15 minutes before mealtimes, before snacks that were above 10 carbs) and how much insulin to give for corrections (again this was the faster acting insulin given for these.) The educators  said Alfies bloods would be very up and down until they had worked out his ratios (how many units of insulin to carbohydrates and how much of the background was needed in addition to the fast acting insulin) but we had twice weekly hospital appointments and they were available throughout the days and we had an emergency number for nights. They then brought Alfie back and said we were able to be discharged and they would see us tomorrow for our first clinic appointment My heart skipped a beat a whole night without someone there on hand to help. 

 We got to the car and Alfie’s bloods were high I really wanted to rush back to the ward but we did an injection and were soon on our way home. Alfie was so excited to see his Daddy and big Brother as being under covid restrictions they weren’t allowed on the ward at the time and FaceTime just didn’t cut it. Me on the other hand felt as though I was taking a delicate newborn home for the first time so scared I was going to get something wrong.  

Alarms were set on my phone  for every 2 hours to check Alfie’s bloods and that nigh Jonathan and I were sat watching the clock waiting for them to go off. Even did the new parent thing making sure he was still breathing not too hot not too cold. His bloods seemed manageable through the first night and we were soon up getting ready for our appointment at the clinic. 

They did more training with us explaining that Alfie’s insulin would be kept the same for the next couple of weeks so they could work out what dosages he would need throughout the day. We had to keep a diary of everything Alfie drank and Ate along with the effects these had on his bloods continuing with the 2 hourly blood tests administering insulin and checking ketones when bloods were above 14. 

We then had our first mishap of incorrect Insulin being given for a McDonald’s I gave his long lasting instead of fast acting. I felt like the world’s worst mum and went into such a panic as it was the evening and clinic closed.I phoned the emergency phone line and they asked questions around what Alfie’s bloods were doing confirming they would likely go high but not to give fast acting insulin and were going to call every two hours to check we were doing ok. They were brilliant thankfully as it was long lasting insulin it didn’t have too much of an effect and his bloods didn’t go too low.  

As the weeks passed we learnt how to carb count and weigh all food out working out the carbohydrates something we have to do every time Alfie eats or drinks anything that contains carbs, all about sick day rules sick day rules these are the days where Alfie would be feeling poorly or have a sick bug where he would not be wanting to eat or being sick and can’t keep anything down. These days are not nice as even if Alfie is poorly he must still try have carbs and insulin otherwise his ketones will go high and he could fall into DKA and become extremely poorly. When they say Type 1 Diabetes doesn’t have a day off they are not joking!! They taught us all about testing for Ketones in the blood and what to do if these go high and how to work out the extra 10-20% of insulin on top of his correction he would require dependant on how high the ketones were. 

After further weeks passed we were lucky enough to get the dexcom we were told we no longer had to do 2 hourly fingerpicks as the dexcom would speak to our phones this was amazing and gave Alfie more freedom not having to stop what he was doing every two hours for a finger prick and test just to have his insulin injection if he was high or wanted something to eat. We continued with our hospital appointments which over time slowed down and are now 3 monthly and we learnt to control T1 as best as we could. With support Alfie was soon doing his own finger pricks and insulin injections himself along with getting involved in carb counting. 

Alfie did have days where he wouldn’t want to eat anything that contained carbs as he didn’t want his injections and would some days get quite upset about it but after a year or so we were lucky enough to get the Tandem T-Slim Insulin pump which was a complete game changer! We still have to do finger pricks and Insulin injections but the pump has made it all a lot easier for Alfie requiring to be changed every 3 days with a few insulin injections between.  

Type 1 is relentless and never stops, it requires 24/7 attention and will always throw in curve balls along the way. You have to be a fighter, a warrior and have the heart of a lion to not let it win (all of which Alfie has and is). I tell Alfie on his bad days this is why life threw this at him it knew that he could take this on, that it wouldn’t beat him and stop him living his best life. He is strong he is a fighter, a warrior, a T1 hero and he is not alone in this he will always have his mummy, daddy and big brother cheering him on alongside. 

In a strange way it brings you so much closer as a family, it teaches you not to take things and people you love for granted.