Rue’s journey

Rue’s journey

Acute lymphoblastic leukaemia including mention of spontaneous remission

Photos from Rue’s journey's post 02/01/2024

After 3 long, painful and tiering years we can finally say that Rue will finish treatment this year. Focusing so much on getting back to ‘normal’ I’m not sure what that is anymore. Feels like one big fever dream/nightmare. I can’t count the amount of times I’ve had to hold you down for procedures or for needles poking in you/examinations or the amount of medications you’ve had to have. How many doses of chemo you’ve had in the hospital and at home. The amount of medical supplies used, feeds, syringe bins, gloves. I think if we tallied the fuel and parking expenses we’d get a shock too 😂. To go through all this at 4 year old when most adults haven’t been through half of it in their whole life time. To still smile, laugh and thrive.. this journeys taught me so much but Rue has taught me the most. They say a baby needs their mother but we all know that we need them more. Still going strong all the best for 2024 please 🙏 waiting on the bell 🔔 ♥️

Photos from Rue’s journey's post 29/11/2023

Before Rueben become sick I could never quite grab the concept of ‘with great pain comes healing’ and I never understood how some people could be so thankful for pain and how they transformed that pain into growth and healing. Whenever I experienced any sort of pain it consumed me. I never learnt, grew or healed until now. I would almost always go into self destruct, lash out and say or do the wrong things which would almost always come with consequences. Consequences I still didn’t learn from.

This lesson was taught to us in the harshest way. From thanking surgeons in the darkest of times, even when life was not promised, to thanking nurses and doctors straight after they’ve inflicted pain on my son because even though it hurt him it has to be done in order for him to heal. In order to heal you have to experience the pain of treatment. Whether what you’re healing from is physical or mental. Pain is not weakness nor strength, but pain is what will contribute to you becoming strong again.

In September Rueben will finish treatment. His journey began on the 22nd of January 2021. The pain of feeling like we would lose him is no pain I can describe. I can’t yet describe it to myself but with pain there is healing ❤️‍🩹 I’ve been more of a nurse than I have been a mum at times. Medical responsibility overwhelming our ‘fun’ days out or holidays. Hands down this is the hardest thing I’ve had to face and I’m just so grateful that Rueben is still so young and won’t remember any of this. Your child becomes sick and you expect to take them to see the doctor, be prescribed a week’s course of antibiotics and for them to recover at home. I still don’t completely feel like we left resuss at barnsley hospital nearly 3 year ago. I think the end of treatment will release that entrapment because then I can say that I took him to see the doctor, he got treated, he’s finished treatment and now he’s better.

2021 a year of heart break
2022 a year of learning
2023 a year of healing
2024 a new life begins ♥️

Come on 2024 let’s have ya 🫶🏻🫶🏻

Photos from Rue’s journey's post 06/09/2023

🤣🤣 how has reception year come round so fast 🥺 it’s took a few meetings and a lot of organising to get you into school but we’re nearly there now ♥️

21/07/2023

A beautiful service for such a special little boy. No coffin should be that small. Rest in paradise Morgan ♥️

C E L E B R A T I O N O F L I F E
L I V E S T R E AM

Please find the link to the appreciation service live stream here;

https://www.funeral-live-streaming.co.uk/morgan-ridler

The broadcast will begin at 12pm (UK time).

We are also hopefully that we will be able to broadcast live from our page.

You can view the order of service here;
https://drive.google.com/file/d/1duZ0C1HrvP6hheKhESgJ9KKvOEsFh1u-/view

28/06/2023

Happy 4th birthday my beautiful boy ♥️

Photos from Rue’s journey's post 18/06/2023

Happy Father’s Day Nathan thank you for everything you do for Rue. In the first year of Rue’s life I counted Nath as a step dad to Rueben. It became very clear soon after that Nath couldn’t be any less than his dad. Especially throughout and after everything Rue has been through. Nath hurt the exact same way that I did when Rue was critically ill. I know that Nath’s love for him is equally the same strength as my love for him. Their bond is unbreakable and I am so grateful for Nath being the best daddy to Rue. Rue couldn’t ask for a better daddy ♥️

01/05/2023

The next 10 weeks are going to be nerve wrecking 😖 Rueben’s eye sight is quite bad and he has a strong prescription. A few months ago we found out his eyes had worsened and he needed a stronger prescription. His eyes go inwards too and hasn’t got very good focus. They were hoping this would have improved with the stronger prescription so they booked him in for follow up for 10 weeks later which was on Saturday where we’ve found out his eye sight has improved ever so slightly but his focus is still off. If not improved by the next follow up they’re looking into treatment options. Nathan asked if he was at risk of going blind (which I’ve wanted to ask before but felt stupid asking as I know nothing about the eye health side of things) and they’ve said that they wouldn’t like to think so or say so but it’s a possibility. Health wise Rueben’s been brilliant. No infections and only 2 hospital admissions in like the past 9 months. Just got everything crossed that they’re happy after these next 10 weeks..

Photos from Rue’s journey's post 29/04/2023

First holiday of the year! Rueben’s been doing really well health wise *touch wood* 🪵 for a while now! He had an admission for 1 night the other week but nothing came back on swabs or blood cultures. I was really nervous for the holiday as behaviour around steroid pulses has been unbearable and has but a lot of stress and strain on both of us. We had a rocky first 2 days on holiday but after that he was back to his bright and bubbly self! Just a few days before he had a lumbar puncture and his chemo with steroids and I was worried that it may take it completely out of him for the holiday but he’s had an amazing time on the rides, went swimming for the first time and played with both of his cousins Owen and Dylan. Back home now and should be moving house within the next couple of weeks ♥️

Photos from Rue’s journey's post 21/02/2023

Rue has been to clinic today and had his new wagon delivered yesterday. Had interrupted sleep last night complaining of ear ache so the doctor took a look today and he has an ear infection. Had his chemo and set off home after a long 4 and half hour at clinic. Hopefully these antibiotics work their magic and clears the infection away so he can return to nursery next week🙏♥️

15/02/2023

Rue has been trying different foods for a few months now. Each day he will try something such as chips, sausage roll, happy meal, banana, chocolate, yogurts, fruit pouches, milkshakes etc. He only eats a small amount but hoping he’ll soon be able to eat enough of what he chooses so he can replace a feed. He sometimes gags but hasn’t had a choking incident for a few months now. Speech and language were supposed to come out today to assess eating but I’m unwell and the risk is too high for her to come as she’s around many vulnerable children. So we have re-arranged for March and if he does eat when we ask him to eat (stubborn 😂) then she can refer him for the camera to see if everything’s moving the way it should be! Which I’m confident it is. I am very confident Rueben will fulfil his nutrition needs orally, in the near future. I do think he has a food aversion that we need to work on and a lot of sensory issues around food. He went a long time not going anywhere near food so it’s understandable. But I finally feel as though we’re moving forwards food wise 🥹😍

Photos from Rue’s journey's post 11/02/2023

After all my little warrior has been through and at just the age of 3 he can write the full alphabet. I writ the letters on after so you can tell what it’s supposed to be but 99% of it is readable anyway! He didn’t need to copy anything just remembered it all off of his own back. Rue has taught me so much about life since the day he was born, through sickness and through health. So very proud and forever grateful to experience these milestones.

Rueben’s been neutropenic and off chemo for 4 weeks with no explanation. Yesterday he started coming down with a cough and cold so it seems something has just been brewing for a few weeks and now it’s here. Hopefully his bloods pick back up soon to get back on chemo. It feels good not to give it him but can’t help but worry when he’s off it. He’s been off chemo more than he’s been on it due to infections and suspected infections etc. Think I’m going to speak to the doctor about it all on next clinic visit to put my mind at ease. Although I do think the dose of chemo is too high for Rueben as he’s experiencing leg pain and his stroke side had become stiffer after receiving vincristine. The phsyio thinks he’s experiencing neuropathy after having vincristine and it’s weakening his legs and bringing out the effects of the stroke which we never normally see/notice. Going to ask for the special blood test they can do to determine if the chemo doses is infact too strong for him .. we will see. I can’t say I’ve ever had to strongly advocate for Rueben apart from expressing my concerns because the team are brilliant. His consultant said to me whenever concerns that’s when she is concerned as I can just sense when somethings out of the ordinary. (I don’t have superpowers, my kid is just an absolute crazy pants and if he’s off his feet for more than quarter of the day something is wrong) 😂 he’s been off it for a few days, no temps so probably overcoming this virus whatever that may be.

We went to opthomology on Thursday and found out Rueben needs stronger glasses. He has a really strong prescription I don’t know who he inherits the shocking eye sight from! He has an astigmatism which is an oval shaped pupil which makes it hard to determine what prescription he needs.. so after seeing 3 people in the opthomology department and 3 hours down time waiting around.. we have a new prescription and opticians booked for Tuesday for new lenses. Opthomology again in 8-10 weeks to see how is eyes are doing as one of his eyes keeps wandering off towards his nose so hopefully this is going to rectify it. I’m thankful there’s never anything serious going on and Rueben’s good health remains.. there’s always something minor that keeps us in regular contact with 6 consultants and 5 therapies.. we don’t go a week without some form of appointment it’s crazy 😅

Also just waiting for Rueben’s new wagon it be shipped from America! I don’t know who’s more excited 😆so photo’s upcoming

22/01/2023

2 years ago today we were just arriving at our local a&e as Rueben’s lip had gone a weird colour, he was lethargic and seemed really poorly. We got in there and I put him on the weighing scales and that’s when I noticed he was rapidly swelling from the right side of his neck. Not long after we were in resuss awaiting Sheffield to come and intubate and take him to the children’s icu in Sheffield. Little did we know what we we’re about to go through. My heart today feels sore 💔 so lucky to have him with me today he’s come so very far ♥️ this was Rueben a few weeks from now 2 years ago just before the bleeds. The photos I’ve got of him from 2 years today are still locked away from even my own eyes. I’d sent photos to family from barnsley as I couldn’t explain the situation we were in and he looked so ill and in pain. I’ve got such a strong boy all this children are so very strong

Photos from Rue’s journey's post 21/01/2023

Rueben received a star award 🥇 and a tkmax voucher from cancer research for all his bravery ♥️❤️‍🩹

20/01/2023

Rueben’s been to see neuro at brain injury clinic this morning. All is obviously well just checking in on his sleeping mainly. On Monday we have the community paediatrics about his behaviours and development, Tuesday clinic for chemo which I’m slightly dreading after it knocking him off of his feet last time and his stroke side playing up. We’ve also noticed they’ve got him booked for theatre on his birthday so we need to re-arrange this 😬 and on Thursday speech and language will be coming out to see if she can assess Rueben eating, now he’s choosing to eat more. So hopefully 2pm is a good time to catch him eating stubborn boy 😂 if chemo does affect him again we have an appointment with physio the week after anyway so hopefully she can see what exactly is going on and offer some tips on what to do. He takes it all in his stride, handles things so well and progresses more and more each day ♥️

14/01/2023

On the 22nd it will be 2 years since I took Rueben to our local a&e, waited for the children’s hospital ent team to come and ventilate him and take him to the icu at the children’s hospital. Little did we know he’d spend 10 days asleep in an induced coma on the ventilator. In those 10 days we learnt that Rueben’s neck swelling, compromising his airway was due to an enlarged lymph node in his neck, trapping fluid around his neck, face and head (between skull and skin). We then learnt that the infections that caused his lip and throat to turn necrotic was staph and strep as well as sepsis. Rueben’s bloods were all life threatingly low and he needed many blood and platelet transfusions and to be isolated and protected from any bugs and germs. We then learnt that he had leukaemia which wasn’t so simple in his situation. To give chemotherapy we risked brain damage and possible brain death, but not giving treatment would more than not be a decision which left us with the word ‘terminal’. Because of the severity of Rueben’s illness at this stage, taking on severe infections and becoming septic as well as being severely neutropenic, it was believed he was in the later stages of his diagnosis so when the results of the first bone marrow aspirate came back it left doctors puzzled as there was barely any leukaemia cells in the marrow. They re-did the bone marrow test and in between waiting for the results, that’s when I signed papers for chemotherapy to begin. Luckily the next day before beginning chemotherapy suspicions that one of his bacterial infections may be a fungal infection. Starting chemotherapy with a fungal infection untreated was an absolute no no as a fungal infection circulating his body would pose a certain risk to life where as with the bacterial infections they were already becoming under control by the antibiotics. So chemotherapy was put on hold. The day after this we received the news that there were no Leukaemia cells left in the marrow. No further evidence of the disease. A spontaneous remission had occurred believed to have been caused by sepsis. Through my own months of research I came across a cure of cancer from years ago called coleys toxins, which explained this spontaneous remission better to me. Because of Rueben’s high temperature caused by the sepsis and the strep infection, it decreased the leukaemia until non. Coleys toxins was used for tumours to decrease the size of the tumour or totally rid the tumour. Coleys toxins wasn’t as successful as radiation treatment which was founded at the same time as coleys patients would relapse or even die during coleys method of treatment as he basically had to cause sepsis in his patients to achieve the remission. His patient then had to survive. So Rueben basically created his own coleys toxins and survived the course of his own treatment (in a way) this was a true blessing and gave him chance to recover fully from all of his infections, recover a lot from his stroke which was diagnosed once off of the ventilator and tackle the two life threatening bleeds he had, head on. He was on and off the ventilator twice since coming off the first time. He then had his feeding tube and port placed ready to head to the general ward and complete his 6 week course of iv antibiotics before setting a date to go home. Of course he threw a wobble and came out in a huge rash but recovered well from that 4 days later so we then got to go home from March until July when he was re-diagnosed.

2 years since the beginning of our wild ride. 1 year and 9 months until we get to close this chapter ❤️❤️‍🩹

12/01/2023

We’re re-seeing some affects of the stroke. It seems the vincristine is taking its toll now and is tiering Rueben’s body that bit more than it was which is causing neuropathy and knocking him off of his feet for days after. Because of the neuropathy it’s then showing the affects of the stroke more as his body weakens. The stiffness In his left leg remains around the same. It’s there but it’s not a huge deal. It will just show more each time the vincristine affects him. We also see he’s probably left handed which again is his stroke side so OT will jump back on board and make sure he’s using the left hand correctly etc. chemo hold for the first time in about a month bloods will be checked next Monday. Back to nursery tomorrow an assessment will be done shortly where someone with visit 3 times to decide if Rueben will need an EHCP. for peg feeds alone he shouldn’t need one but if she thinks he’s too far developmentally delayed then possibly he will need one for the extra support. can’t believe Rueben starts reception in September and he’s 4 in June 🥲😪

24/11/2022

Rueben’s new hair do. Finally let Darren the barber get the razor on his head ♥️ all Christmas presents wrapped, decorations up and holiday booked for April 🥰

15/11/2022

Not posted for a while. We’ve had a really good 5 months! With no admissions and no infections! Was on oral antibiotics the other week but just as a precaution! Rueben pulled an all nighter last night and woke up this morning with a temp of 39.7 🥴 we packed our bags and we came through for his routine bloods anyway and let them know about the temp. Temps come down to 38 but heart rate is high, waiting for blood results but think we’re staying in 😩 but 5 months since last admission! I am not complaining. Thrown up all over nurses whilst accessing port and now he’s sat in buggy going “mummy,mummy,mummy .. yooohoooo” 😂 fingers crossed no infection and it’s just viral ♥️

Photos from Rue’s journey's post 03/10/2022

Rueben has been managing nursery for 3 hours a day for a few weeks now! ‘Touch wood’ he’s been infection free for months now since he swapped feeding tube and yes I touched wood 😂. Rueben’s been having lots of fun making new friends and not having to attend as many appointments😁. I’ve continued my weightloss journey going from 13st 4lb down to 10st 12lb and now have moved onto weightlifting with a Personal Trainer. Totally recommend if you have any trauma or built of anger or frustration! We’ve had a good few month I just can’t believe things have been better for us finally! We’re at clinic tomorrow for IV Vincristine and steroids. Fingers crossed 🤞we can do a full month of oral chemo this time without no holds! My biggest worry lately is what do I buy him for Christmas 😂🎉

07/09/2022

Rueben’s neutrophils keep dropping and it’s mostly been put down to infection but even after the infections they still drop. Will be having a specialised blood test not 100% sure what it is. Has anyone had the same problem? He’s been off chemo more than he’s been on it and I know it doesn’t necessarily matter but it’s nerve wracking

08/08/2022

Understanding a spontenaous remission- something I’ve been trying to do for this past year. You’re welcome to share this in hope it can at least one person, drop your opinion below 👇

A spontaneous remission in cancers is defined as the remission of cancer or blood cancer without any treatment, or with treatment that would not be expected to cause the tumour, or the amount of leukaemia cells in the marrow to decrease in size or ratio as much as it does. A spontaneous remission may be partial or complete and may be temporary or permanent. More commonly it is a temporary remission and will almost always come back. It occurs 1 to 2 times every 5 years.

It is found that these spontaneous remissions do not happen on their own and are often accompanied by either infections or reactions to things such as vaccinations which lead to onset symptoms for the next few days, then achieving its remission. It’s understood that this happens due to two or more separate immune reactions occurring at around the same time as one another. One being from cancer and the other being from an infection, allergic reactions or even an health condition that’s pre - diagnosed in the patient, that has then flared up in this particular time.

The fever occurring prior to the spontaneous remission is significant. Usually it is assumed that the fever is caused by bacteria alone, when in fact it is suggested that two fever spikes occur at one time. One being caused by the combination of acute inflammatory responses and the other caused by the growth of bacteria. A rise in body temperature seems to be the key. ‘Coley’s Toxins’ was a cancer treatment recognised and first tested in 1891, by the man him self William B Coley. In 1891 he injected the streptococcal bacteria into a patient with inoperable cancer. He thought that the infection he had produced would shrink the tumour and so he was right, in this case. He was successful and this was one of the first examples of immunotherapy.

William coley did however find that his method was causing some of his patients to die from the infection that he had injected himself to achieve a fever response, rather than the tumour it’s self. So William re-assessed and changed his method, meaning no more live bacteria would he injected into his patients. The bacteria was boiled before injecting, which did make it more difficult to achieve the fever response he was aiming for.

‘Coley’s toxins’ gives us a near perfect explanation as to why a spontaneous remission occurs. An infection - leading to a fever - leading to remission. It’s almost like a persons body that had the spontaneous remission made it’s own Coley’s Toxins.

My motive- My motive is my son and understanding the best I can about what happened to him in the time of his spontaneous remission with B-Cell acute lymphoblastic leukaemia. So this is my son, Rueben’s story-

I’m January 2021 he became sick with a temperature and a wound to his lip from days prior which had not healed. Previously he had 2 bouts of sickness which were mis diagnosed as teething problems. Rueben was 18-19 months at the time when symptoms occurred. After seeing his lip not healing and him becoming really lethargic we took him to our local a&e and upon arrival I noticed he had begin to swell, to the right side of his neck. This then continued and we were sent over the the resuss. We waited there whilst surgeons from our closest children’s hospital made their way to intubate him to protect his airway. After intubation he was transported to the ICU at our local children’s hospital where he remained in a medically induced coma for 10 days. In this time he underwent a CT scan which showed us that the swelling was caused by an abnormally large lymph node in the right side of his neck. This however was trapping fluid from his neck and around his head, between his skull and his skin, explaining the severe swelling he had around the entire of his face, neck and back of his head.

We also learned that he had streptococcus and staphylococcus infections as well as sepsis. This meant that he had to stay on the ventilator until the infections were under control until he could have airway steroids to decrease the trapped fluid. Airway steroids or any other type of steroids for that matter can not be given along side severe cases of infection as it poses a risk of circulating the infection around the entire body. So we had to wait until it was safe to do so. Also upon arriving on the icu he needed blood products and platelet transfusions and we learnt his neutrophils were nearly non. Neutrophils are what help your body to fight infection. You can have a decrease in neutrophils from simply having a cough or a cold, but in more severe cases and larger count drops it’s usually associated with chemotherapy or undiagnosed cancer or other life threatening health conditions such as aplastic anaemia, for example.

In my son’s case it was intact cancer, blood cancer. Acute lymphoblastic leukaemia. This was found by carrying out a bone marrow test which provided us with the results 24 hours later. Although there was enough information to make a diagnosis, it wasn’t enough to make an accurate diagnosis. Haematologists we’re unsure whether it had come in on the B-Cell or T-Cell so they took another bone marrow aspiration. Then the unimaginable happened. It was gone. No leukaemia cells were detected, the marrow was clean. Haematologists explained to me how rare this is and that they had made contact with Great Ormand Street hospital in London for more information on the matter. It was explained to me that no chemotherapy was needed at this time and that it will likely re-appear and need treating within the next 12 months. From the first bone marrow aspiration to the second, chemotherapy plans were on hold. I had signed necessary paperwork for it to begin a few days later when the infection was more under control, but still it could have posed a huge health risk to my son due to part of the chemotherapy being steroids, which could have circulated the infection, the same reason we were already avoiding airway steroids.

Once knowing the leukaemia was in its spontaneous remission we could focus more on the infections which was the biggest risk to his life in that time. Once the infections started to seem more In control with the antibiotics he was given the airway steroids, which over the space of 2-3 days decreased the fluid which was trapped and made it possible for him to come off of the ventilator and breathe for himself. When he came round he was weak and couldn’t move any part of his body alone. He needed full support and clearly had right sided facial weakness. Because of light suspicions he then went for an head CT where we learned that he had suffered a stroke to the right side of his brain, affecting the left side of his body. This didn’t explain the right sided facial weakness, however this turned out to be facial nerve palsy caused by the right side of his face being so swollen from the fluid trapped around his head, face and neck.

Furthermore he had then suffered a large bleed after needing suction to clear secretions on whilst on HDU. The bleed was uncontrollable for quite a while and again blood products were needed. He went down to theatre where surgeons found necrotic (dying) tissue and a necrotic lymph node, believed to the the one that had swelled originally. Surgeons cauterised the area in attempt to burn off the dying tissue and bring back new, live tissue. They were certain this was fixed and my son was re-intubated for a further 10 hours. When off the ventilator, again we went over the to HDU and a few days later we’re sent to the general ward. My son was still reliant on regular suctioning as he couldn’t swallow his secretions, meaning this was a huge choking risk. We quickly learnt that the medical ward was the wrong place for him due to not being entirely healed in that area and constantly trying to re pass NG tubes that he kept on pulling out himself, irritating the area even more. After just one day on the general ward he did choke on his secretions which then caused another bleed due to his throat not entirely healing, which no one had suspected. He was taken to theatre once again, the area was cauterised and dissolvable gauze were packed in the area, the same as last time. It was confirmed that the cauterising hadn’t worked the previous time and that there were more dying (necrotic) tissue in his throat and behind his nose. The surgeon told me that he’d never seen tissue die like this before his eyes.

My son was then re-intubated and remained in a medically induced coma for another 48 hours whilst they carried out another head and neck CT and awaited the results from the dead lymph node, that had been sent to pathology for testing days before. It was suspected that my son may have lymphoma rather than leukaemia but when results came back we knew that wasn’t the case and that it was in-fact all caused by the streptococcus and sepsis which targeted his throat and behind his nose. The CT scan showed us that the necrosis had stopped spreading and he was sent to surgery not long after for a portacath placing for long term antibiotics. 6 weeks worth of iv antibiotics were put to plan and he was taken off of the ventilator and sent over the the HDU after organised a surgery for a gastrostomy (PEG) so he could feed without irritating his throat. He remained on TPN for a few days whilst awaiting the peg surgery, then for a few days more whilst his stomach could handle fluids going into it. He was sent over to another general ward where it was risk assessed and began to slowly recover on that ward. The original wound to his lip had nearly healed at this point, after it becoming necrotic in result of the staphylococcus infection. After spending around 5-6 weeks on the general ward we we’re set a discharge date. We fell a few days short due to an allergic reaction which then cleared up without any further complications. We went home and we waited for cancer to come back. We attended follow up appointments with a variety of medical professionals and therapies and he had his blood drawn weekly until we noticed the blood work changing around mid-May until re-diagnosis in July. It wasn’t the usual presentation, his neutrophils were dropping by the week and his WBC was slightly raised. After the neutrophils dropping so low from May - July he was re-admitted into the oncology ward this time and a bone marrow aspiration was taken and it was confirmed that he had B-Cell acute lymphoblastic leukaemia. There isn’t a lot of support out there for people who go through spontaneous remissions so if this post reaches even one person going through it and offers them some help or support then that would be amazing.

Website