If you are reading this then the chances are that you know our story and how we got to relapse. For those who don’t, I’ll give you a quick recap. On 4th February 2022, my son was diagnosed with Acute Lymphoblastic Leukaemia. He was 4 years old. What followed was just over two years of treatment: bone marrow aspirations, lumbar punctures, a wide variety of chemotherapy medications administered in a wide variety of ways, a lot of trauma and fear for all of us but also a lot of fun. On 10th March, Mother’s Day 2024, he had his last dose of chemo and officially finished treatment. A few days later he had his port removed and rang the bell. Off we went to anxiously start to rebuild our lives without the shadow of cancer and all that brings looming over us.
We had an absolute blast, we went to Disneyland Paris for his end-of-treatment wish holiday, had lots of day trips to fun and exciting places, finished off the school year full of hope for increased attendance and less disruption then packed our bags and headed off on holiday. That week in Butlin’s was the stuff of dreams. We loved being free of medications, NG tubes, watching for temperatures, working out the route to the nearest hospital, making sure I had the contact details for the nearest hospital, and taking 2 extra bags full of medical supplies. It was incredibly liberating to be a “normal” family. Little did we know how soon that would all change.
A few days after we returned from holiday I noticed a lump on his head. I thought it was a bit weird because as far as I knew, he hadn’t banged it. I put it down to him bumping his head and forgetting to tell me but thought I’d keep an eye on it to see if there were any changes. The next day I noticed another lump on his head. again he hadn’t banged it. I started to run through the possibilities in my mind: They didn’t look right for bug bites, he hadn’t banged it, they weren’t ingrown hairs, they didn’t look right to be spots, there were no scratches that could have got infected. I reached the conclusion that these were unexplained and therefore needed to be looked at by a medical professional. He was completely fine in himself and had none of the classic signs of childhood cancer (see below) or leukaemia so I wasn’t overly concerned about the possibility of relapse at this point. We were heading to a paediatric oncology summer party a few days later so I hoped I’d be able to get one of the Clinical Nurse Specialists to have a little look and offer some guidance.
When we got to the party there were none of the nurses or doctors there so when we got home again I tried to take some photos of the lumps to email to the team to review. The next day the ward phoned me and asked me to take him in to be reviewed because the images I had sent were not very clear.
I took him to our shared care hospital where the majority of his treatment and all his clinic visits had taken place. Our usual consultant was on holiday but the other oncology consultant was on shift and reviewed him. She ordered a blood count and referred him for an ultrasound. The blood results came back normal and didn’t raise any concerns. He still had none of the classic symptoms but I was starting to get a little more concerned now that the tumour specialist had requested an ultrasound. Again, the possibility of relapse still hadn’t entered my mind.
A couple of weeks later we headed off for him to have his ultrasound. Beforehand I had done what we always know we shouldn’t do but end up doing anyway and I had been doing some googling. I knew that if the lumps appeared to be fluid-filled then they were unlikely to be anything sinister but if they were solid then they were most likely cancerous. The ultrasound technician confirmed my worst fears and told me they were solid but not to worry because there were many innocent reasons for solid lumps. He then asked who had referred us to ultrasound, his face and demeanour completely changed when I told him we had been sent by paediatric oncology. That was the 21st of August 2024. That was the day that I “knew” he had cancer again.
The next day I had a phone call from the hospital asking me to bring him in a day early for his clinic visit because “they had a space”. As I was already out with my daughter so I called my husband and asked him to get our son ready and to meet us at the hospital. When we arrived at the hospital, the consultant, the lead CNS and a member of the play team arrived. The lady from the play team took the children into the playroom and the CNS and consultant took my husband and myself down the corridor to a room to talk to us. As soon as that happened I knew we were not about to receive good news.
What we were told was both surprising and expected in equal measure. We were told that they suspected that this was a relapse but an extremely rare relapse presentation called Leukaemia Cutis where leukaemia cells form in the skin tissue. This was surprising news, I had never heard of leukaemia – a blood cancer – causing lumps before. I had fully expected to be told that the lumps were cancerous but I had expected to be told that they were a secondary cancer caused by the treatment from the first cancer.
We were told that the next steps would be to refer to Bristol for a biopsy of the lumps, a bone marrow aspiration and a lumbar puncture. The biopsy and bone marrow aspiration were scheduled for the 4th of September, the day after returning to what I had hoped would be the first year at school with no cancer treatment. How wrong I was! Just 2 days into the school year and his attendance was 50%!
The preliminary test results came back a few days later and confirmed what we already knew – it was in fact relapse, the leukaemia was back. The consultant and CNS at Bristol Children’s Hospital called me on the 6th of September to tell me that they could now confirm relapse and that he would need to be admitted to start treatment on the 16th of September. My heart sank and they clearly picked up on something and I told them that the 16th was his birthday. They very kindly said they would see what they could do.
On the following Monday, they called me to say that they could rearrange the pre-treatment testing (an echo and a blood test) so that we could go in on the evening of his birthday and that they wouldn’t do anything other than some obs and a height and weight so that he could go to theatre on the morning after his birthday to have a new central line fitted.
As we had a bit of notice before being re-admitted to start again we just put all our energy into doing things together as a family and doing things he enjoyed and wouldn’t be able to do for a while. Between being told he might be relapsing to him being admitted to start treatment, we went to Barry Island, Cadbury World, swimming, bowling, Pets At Home My Pet Pals event, had meals out, went to the cinema, the Make A Move Event and did some filming for BBC Breakfast!
On the 12th of September, we headed back to Bristol again for an echo and pre-treatment blood tests to give us the opportunity to try and enjoy his birthday as best we could before him being admitted for an unknown length of time. His echo and blood tests all came back normal.
Thoughts/Facts/Brain Dump
- He was diagnosed with ALL – Acute Lymphoblastic Leukaemia – in February 2022
- He finished treatment, rang the bell and had his Port removed in March 2024
- The first lump appeared on 4th August 2024
- On his first diagnosis, he was classed as standard/low-risk
- He took part in the ALL Together 1 trial
- He was randomised to NOT have vincristine and dexamethasone during maintenance
- His relapse presentation is extremely rare, I’ve yet to actually to meet a Doctor who has seen a presentation like this
- His blood results have all come back normal meaning the leukaemia (a blood cancer) is not actually affecting his blood at the moment
- The number of leukaemia cells found in his bone marrow was so low that they didn’t reach the threshold to be classed as a marrow relapse
- If the lumps hadn’t appeared and they hadn’t been thoroughly investigated, it would have been months before we saw any of the classic symptoms
- As his relapse occurred within 6 months of finishing the first treatment, he is now classed as high-risk
- This is classed as an extramedullary relapse (EMR)
The Treatment Plan
So far what we know is quite limited, things will become more clear as treatment progresses and further tests are carried out. The plan will also change as his test results change due to the effects of treatment.
He was admitted to Bristol Children’s on the 16th of September 2024 where he just got settled for the night and had some obs done. On the 17th of September, he was taken to theatre to have a Hickman line fitted, have a lumbar puncture to get a sample of his cerebral spinal fluid and have his first dose of chemotherapy injected into his spinal fluid. He then had a week of intense chemotherapy to start attacking those pesky leukaemia cells. After the first week. the lumps had disappeared. His consultants in conjunction with the National MDT (Multi-Disciplinary Team) decided that the lumps were an extremely good visual indication of the effect of the chemotherapy on the leukaemia and that he didn’t need to have quite as many invasive tests. They decided that he could be moved on to the next stage of treatment after a week instead of the month that we had initially been told.
On the 24th of September, he started to receive a new to pediatric oncology drug called Blinotumomab. This “wonder drug” has been described as a much kinder treatment than chemotherapy although the first few days can be a little rough as the body adjusts to it. Blinatumomab or Blina for short is an immunotherapy. In simple terms, this drug is given via a 24/7 continuous drip over the space of 28 days. It goes in and essentially ‘teaches’ the body’s white blood cells to target and attack the leukaemia cells that are coated in a protein called CD19. It really does amaze me the science and more importantly, the brain power that goes into things like this. It’s both humbling and astounding.
After he’s had the first cycle of Blina he will have further testing to see how many if any leukaemia cells remain. It is then that we will know what is happening next. We’ve been told that he will either have another cycle of Blina or he’ll have a bone marrow transplant or CAR-T.
What we do know
- Once he’s receiving the Blina via a portable pump, he won’t need to stay in the hospital but he won’t be able to go home either
- When he has to stay close to the hospital, we’ll be placed in some local accommodation, likely a Young Lives v Cancer “home from home”
- If he does need to have a bone marrow transplant, we will most likely be sent to Great Ormond Street for this
- They have already started looking for a bone marrow match for him so they have someone if they need them
Please consider donating to our GoFundMe to help us get through this for a second time.
We’re reaching out to our friends, family, and community for your support as our Super Toby faces acute lymphoblastic leukaemia for a second time. This relapse diagnosis has turned our world upside down once again, and we’re determined to be there for him every step of the way.
As you may know, I’ve been a passionate campaigner about the effects childhood cancer has on families, in particular the financial impact it has. Research carried out by Young Lives V Cancer shows that on average it costs £730 extra PER MONTH to have a child with cancer. With parking near the hospital costing £18 per day and the cost of fuel for a 2-hour round trip each way then it’s easy to see why.
The road ahead will be challenging, both emotionally and financially. The cost of parking, travel expenses, meals for us (parents don’t get fed in the hospital and we only have a kettle and a microwave in the parent’s room) and other expenses can be overwhelming. We’re hoping to raise funds to help alleviate some of this burden, provide little treats for both children to lift their spirits and ensure that we can focus on supporting Toby while he receives the best possible care.
Thank you for your generosity and support. Every donation, no matter how small, helps us keep our heads above water and brings us closer to our goal of helping Toby overcome this cruel disease for a second time at just 7 years old.
