Our Ambassador Theo

Theo was diagnosed when he was three years old with ALL (acute lymphoblastic leukaemia). That was in 2018. After 12 months of chemotherapy, Theo was moved to the management phase of treatment, expecting two more years of chemotherapy which is managed at home.  

But on 13th June 2020, Theo’s mum Katt announced they’d been given the devastating news that Theo’s cancer was back and in his spinal fluid and brain.  

“We started intensive chemo immediately. Depending on Theo’s body we will see what chemo follows then we will look for a match and go for bone marrow transplant and have radiotherapy. We face a difficult and long road ahead. He is a fighter and as a family with great support from family/ friends and community we will beat this. Theo has this. 

Katt continued to provide updates on social media, as Theo faced infections and harsh side effects due to the treatment his doctors were using to try to save his life. 

28th June: Quick update, Theo hasn’t been quite himself now for a few days; his steroids have kicked in making him extremely angry, he’s been sick a lot of the time and now on constant antibiotics and fluids as his blood gasses are very high and they don’t know why or what is causing it, as his observations all seem ok.  Even through the pain, and feeling unwell this boy never ceases to amaze me with his smile, strength and courage.

The family received the news that Theo’s brother wasn’t a match for a bone marrow transplant so the search began worldwide for a donor. 

9th July:  I know it’s been a few weeks since we last updated and this is a long one sorry but if I’m being brutally honest, it’s been one of the hardest weeks since finding out Theo had relapsed. 

We also have a date to meet the transplant team and although it will be a while till we can have it; we can at least see what’s to come. Rob also mentioned we have several 10 out of 10 matches for Theo which is amazing news. But I still beg people to join the register as it could be you helping Theo as we had non on Monday. For those close to us know how worrying, emotional and draining this week has been, we can’t thank these doctors enough and nurses too. Not only helping Theo, but holding me up when I needed a cry. Theo is a fighter! Please keep him in your prayers and hope this is a turning point. 

21st July: We have a transplant donor from Holland, a young 22-year-old girl and as long as she passes her medical, we are all good to go for Sept/October time. But for now, we try and enjoy our time at home as a family making memories and each minute count.  

The journey towards transplant continued for Theo with a donor in place, but he faced many hurdles before the operation could safely go ahead. 

9th Aug: Chemo is going amazing; we even did this week’s session a week earlier than planned as his counts were fab. We had a lung scan again this week and the nodules they found are still there but the haze and halo around them is going slightly so that’s great news and a step in the right direction.  

We have crammed so much in to make as many memories as possible that we are all exhausted but will have loads of time to rest when locked away for the transplant. All looking good for transplant end of Sept start of Oct. I think we have another 7 weeks of intensive chemo before radiotherapy and his op then transplant can take place.  

This kid never ceases to amaze me, he has mucositis all the time, his legs are so much weaker now it hurts and he walks on the side of his feet and he’s been very sick with this lot of chemo but he just gets on with it. People always ask – ‘I don’t know how you do it or where u get your strength from’. The answer is easy – 1. we were never given the choice and 2. we get our strength from this amazing 5 year old boy.  

One thing out of everything though that I’ve found bothers him more this time round, is his hair loss. He wears his hood up or hat on most of the time unless he feels comfortable around you, and when I asked why he said because people stare and look at me which breaks my heart.  But it’s TRUE so my response is ‘Son, they only stare because it’s the first time they have ever seen a real-life superhero and they can’t believe it’.  

It’s definitely tougher this time round, mentally. He understands more now he’s older. I totally get why he feels more at home at the hospital now with his friends in here because being bald and unstable on your feet is normal. In the ward, no-one cares if you’re hooked up to bags, bald, wearing pjs and running round with a sick bowl on your head!… These kids are just amazing and I know they will keep fighting their cancers as there is no one stronger than the kids of 84 x 

14th Aug: As much as we have tried to cram in lots of memory making, Theo has slowly taken unwell. Last night after a little trip to the safari, he spiked a temperature and we had to rush him in to hospital. We were put on a Covid ward then moved back to A&E as its too dangerous with high chemo and no immune system. Just after 2am they moved us to another ward and Covid tested him for the 5th time (even though he’s already had it) and after seeing our doctors today we think it’s a line infection as he continues to spike. He also has raw skin on his feet due to chemo so being treated for that too.   

Tonight we were allowed back on our normal ward 84 in our fave bed and fave room. He’s just had another blood transfusion and about to start another platelet transfusion. Hopefully this line infection passes soon and his line doesn’t need removing but he’s had a busy afternoon looking after his teddy bears xxx 

Theo’s treatment will result in late-effects as he grows and Katt explained that they hope that Theo may one day benefit from a ground breaking procedure, aimed at giving him the option of having his own children, despite his cancer treatment. 

3rd Sept: It’s been an eventful few weeks after being allowed home. We have tried for the past 2 weeks to start chemo but counts haven’t quite been there. Then we were brought back for more rounds of chemo and a blood and platelet transfusion again. His body is struggling to keep them up as well as his immune system.  

I can’t believe on the 25th of this month, Theo has done 2 years of treatment – its flown by.  We also have a date this month to meet the Christie’s proton radiotherapy team ready to start. Then on the 23rd for some of his testicles to be removed and hopefully give him a small chance of having the option of having children of his own when he’s older. As long as he’s here, we don’t care as he can always adopt.  

It’s been a roller coaster of emotions, with seeing friends whose children are now shining stars in the sky and also seeing good friends go home to make memories with their boy. There is nothing more to be done it’s a sharp kick of reality how quickly life can turn for any of us and in an instant your life can change forever. Not a day goes by I don’t pray for miracles to happen. I am going to try and update daily when Theo goes to transplant but right now whilst we are home, I’m making the most of having all our boys and together and making each moment count. 

9th Sept: Theo had one lot of chemo last night but not before a trip to the roof top playground to play with his ward friends. They had so much fun as always and then back down for chemo at tea time. Another chemo at 4am this morning and his chemo in the leg at dinner. We had 2 more rounds, one at tea time and another early hours and we could come home. But Theo being Theo has gone and got a temperature and that means we’ll have to stay in hospital a minimum of 48 hours. Hopefully this is just his chemo and the high strength cytarabines always give temperatures so hopefully we can control this.  

22nd Sept: We are still in hospital, just over 2 weeks now but at least he could have his last 2 rounds of chemo. Another milestone ticked off the list, then its another tomorrow for Theo and a very emotional day for mum and dad, as he goes to theatre to have cells removed from his testicles to freeze, to try and give him a chance when older of trying for his own family.  

For girls its easier as you just remove the eggs but as this is a new thing and never tested on a human boy, we are going off the results tested on a monkey. So, we know we are doing the best thing, to at least give him a chance, but it’s also a very emotional thing to do. The meetings have been endless, the paperwork has been the hardest especially when in a meeting we were told we needed to make the decision to donate if Theo wasn’t to make his 18th. These aren’t words we want to hear. We know he’s a fighter and will get through this, but still …. it really hurts to think tomorrow is the start of the transplant journey and without the help of the NHS or Science, Theo may never have the option of making his own children.  

We just want our baby well I just want him to have the best life. I want him cancer free and home where he belongs. Whilst down in theatre he also needs a tooth out on top of this cold that’s getting on his nerves. We have our every few days top up of platelets and blood and hopefully not too much longer before we can go home. 

4th Oct: Theo has not had the easiest of times since his op. He’s been fighting off quite a few infections in his mouth where the tooth was taken and in his Hickman lines. His temps went up to 41.8 for several days, he manages to shift one before the next infection starts.  

We have also had a massive allergic reaction to platelets and tonight a new reaction to plasters! This kid loves to keep us on our toes!  

Now on week 5 on Ward 84, but on one good note we did meet the proton beam team at the Christie’s hospital and had a look round to see how radiation happens in transplant. We also found out that transplant has been moved back again to the 15th November now so definitely in for Christmas. We are hoping to have a mini Christmas before transplant with his bigger brothers if the monkey stops picking infections up so we can get home at some point. To make some memories before Transplant, for now we just keep going – one foot in front of the other and take each day as it comes xxx 

Preparations and pre-op treatment complete, on 19th November, Theo’s transplant could finally go ahead. 

26th Nov: 1 week into having had his transplant in and Theo is doing amazing. He had a few issues with (mucositis) blisters in the mouth and throat so have now been put on a permanent infusion of morphine for the pain. In between the pain and the rest, Theo has fitted in school class most days and lots of playing with mummy and daddy. The nurses have been so good and made us feel at home, it helped by having our kitchen re-opened just a bit of normality.  

We have loved our little visits from some of the staff of 84, Theo loves to see Ward Nana Ang knocking at the window, and we have loved to see our ward family waving from the bridge, makes our day. All in all, Theos doing well. We have another week or so before we know if her cells [the donor] have taken over, but right now Theo’s cells are 0 so its giving hers the best chance to take over xxxx    

31st December: So, I’ve wrote and re-wrote this so many times cos it’s been a tricky week to say the least, our family has definitely been through it. And I for one can’t wait to see the back of 2020.  

This week since Christmas and having amazing counts, sadly they decreased again which is very unusual as Theo has been on Gcsf (something that ticks his counts to multiplying) and has been since day +21. We are now day +44 and still on it and counts have been so low we haven’t been allowed to leave our room again. We are also showing signs of Gvhd (graft versus host disease) but have managed to control with antihistamines.  

We saw Rob [Consultant] yesterday and we still had no MRd results to say if Theos cancer was back and the reason his counts where decreasing . Rob wants to take action and has decided Theo will either need a top up of her cells or another transplant which will take place in January. It’s been a roller coaster of a night and I’m not ashamed to say I cried myself to sleep. This morning we had a second meeting with Rob where he put my mind at ease in saying he’s so happy with Theo, and how well he is, his counts have come up a little. This afternoon we received the news we have been waiting for that Theo is MRD …NEGATIVE… means no more cancer detected! The news we have all been longing for! We know we will always live in fear but right now, I’ll take that and can honestly say we are pissing rainbow! We know we have so far to go and face either a cell top up or need to start the whole process again and have another transplant using another donor, but right now we are just so happy his MRD is negative and whatever happens, and no matter how long it takes, Rob will do right by Theo. That’s all we can say right now and we will continue to take 1 day at a time.  

Happy new year #Theostribe thank you for all your messages, txt and well wishes it means the world the love and support you show not only Theo but my family too, means the world. Wishing everyone a better 2021 xxxx 

And then on the 8th January 2021, Katt posted a montage of photos, the final ones contained this message from Theo: 

“I’m 100% donor. I’m cancer free and don’t need another transplant!! Or a top up of cells. Bring on Disneyland a year from now and Covid free we hope.” 

10th January 2021:  Firstly, we haven’t booked Disney yet we will save so hard to make sure he and his brothers have the best trip… Secondly, sadly, we are not home yet. 

Third question is if can we ring the bell? Well technically we can ring the end of treatment bell as he is 100% donor and MRD negative (no cancer detected) but we are still a long way off. We don’t want to jinx things nor do we want to do this without his brothers. They’re not allowed on the ward so we would only be allowed me and Dad and it’s not what we had planned. We started as a family we will finish as one.   

We have been told we will need 3 times a week check ups but eventually he will go on monthly checks for I think a year, where they will test how much % donor he still is an and any if cancer is detected. Then we go to 3 monthly for a few years before going yearly for the rest of his life. 

So the fear will never leave us, and the journey never really ends but we do get the peace of mind that they are keeping a close eye on him. Theo won’t be allowed back to school for 6 months to a year post-transplant and won’t be allowed (not that anyone can these days) to mix with large groups. We have to be so careful with him cos infection can be serious for Theo; no Birthday parties or family get togethers. He can slowly be introduced to close family and friends but all have to be 100% well which people know anyway from when he’s been on chemo, he won’t be allowed near any animals not even his own if we had any and that’s for about 6months to a year.   

And no take outs. All food has to be made fresh no reheating of food as it could kill him so we do need to bubble wrap him for the next 12 months lol. So, no life won’t go back to new normal just yet or for a while but so worth it to keep him safe so this lockdown may not be great for some but for us this will be life-ish for 12 months to protect Theo. But we are so excited to be able to go for walks as soon as we get home, get some fresh air.  

He’s a warrior this kid. One of a kind and definitely destined to do amazing things in life. …never give up HOPE cos it’s all we really have xxxxx