Tilly was a healthy, happy 10 year old. She swam lots, ran cross country for the school and had loads of friends. Just after Christmas 2015, she found a lump in her neck. After a trip to the doctors we were told it was a ‘virus’. Isn’t everything always a virus…?! She looked pale, but I was told not to worry, she’s fine, she’s healthy and happy. She slowed down in cross country, and then couldn’t finish a course. The lump didn’t go, the paleness progressed to dark circles under her eyes and my worries got worse. Another trip to the doctors, again, “it’s a virus”, I practically had to force the doctor to send her for blood tests after I threw a full temper tantrum, “It’s not right, something isn’t right, why does my daughter look like a drug addict?”. A week later, Wednesday March 2nd, we went back to the doctors for blood tests, Tilly was very cross with me for insisting on a blood test so I had blackmailed her with a fun weekend ahead… That night after school both kids attended 2 school discos, one after the other. They danced and ran for 4 hours, ate tons of sweets and were both sweaty critters!
We got home at 8.20pm. We had got 5 missed calls… I didn’t think much about it, and got on with getting the kids in bed as it was late for a school night. The phone rang again… so I answered it. It was our doctor. She explained that Tilly was severely anaemic… I immediately thought she was starting her periods… but the doctor carried on talking… blood counts all over the place, further tests, lumbar punctures, go to hospital immediately! What?!?!?!?!? I asked her what on earth she was talking about, we weren’t going to hospital now, Isaac was already in bed and Tilly was in her PJs. Was it really that important? She said that Tilly was poorly…I asked her what did she think it was, she said “I could be wrong, and I hope I am, but I think Tilly may have leukaemia”. Lordy… what do you say to that? I had no words… I sat on the kitchen floor… I didn’t hear what else she was saying… all that I could think was that she would have to have chemo and she would lose all her lovely long brown hair… I got off the phone, and tried to carry on as normal. Tilly was asking all kinds of questions and I told her we had to go to hospital, but that I had arranged to go first thing in the morning… She went ballistic… it was World Book Day the next day and she was going dressed up as the Cheshire Cat… she was heartbroken! I told her that there would be loads of people dressed up at the hospital and we should be able to get back to school for the afternoon. Well, it turned out that I had lied on both accounts… We didn’t see anyone else dressed up, and we didn’t make it home for the next 10 days.
As we walked on to M3 there were lots of info posters on the walls talking about cancer… and there were lots of children with the stereotypical ‘bald heads’. I couldn’t get my head round why we were on THAT ward… Tilly didn’t have cancer, this was ridiculous, a total overkill, probably because I kicked off in the doctors surgery in the first place, kind of payback, you know, I wanted a big fuss, so here it is… in abundance! She had blood tests, they took so much that it made her feel ill and she passed out… then they put us in a room by ourselves and told us to ‘wait’. We were offered drinks, but I couldn’t stomach anything… we were there for hours… no chance of returning to school today… then they came in… They… a couple of doctors, a nurse and a play therapist. The play therapist took Tilly away… That wasn’t a good sign… The doctor said “you look terrified” to which I replied that I was, and could she just tell us what was going on. She cut straight to the point, “Tilly has leukaemia”. Never did I think I would be hearing those words… you read about this in those cheap magazines that are full of far-fetched stories. I don’t have a child with leukaemia… I’m not a parent of a child with leukaemia… Tilly does not have leukaemia… It was all wrong, they’d clearly got the tests mixed up, or didn’t know what they were doing, obviously… but the doctor carried on talking, telling us things we never wanted to hear, introducing us to new words that I never wanted to be part of my everyday vocabulary. I had to sort myself out… I needed to see Tilly.
Tilly came back in and knew I’d been crying… we explained that she had bad blood and needed some strong medicine to sort it out. She wasn’t impressed to say the least but actually took it all in her stride. After that was a whirlwind of cannulas, blood transfusions, platelet transfusions (that I didn’t even know existed until then!), theatre trip for a central line, lumbar puncture and bone marrow aspirate, chemotherapy, antibiotics, antivirals and a whole host of other medicines… And the texts and phone calls to inform people what was going on. They were hard…and draining… people didn’t know what to say except ‘sorry’ but it wasn’t their fault so they didn’t need to say sorry! We decided to just get on with it all and not to mope. No point as it wouldn’t change anything… We made sure we smiled, and laughed… and tried to have fun… It was surreal… But we did what we had to do, put all our trust in the doctors and didn’t look at anything on Google!
Tilly had Acute Myeloid Leukaemia, which is more common in adults… and it needed aggressive treatment.
Each round of chemo brought its own problems, infections, anaphylactic reactions, pneumonia, sepsis, and also a new ‘taste’ for Tilly, her favourite drink and flavour of crisps changed each time as well… It was like she was having pregnancy cravings. She had chemo over a period of 6 months. She responded really well to the chemo and the doctors were happy with her progress. She was ‘lucky’ as she didn’t need a bone marrow transplant. I held onto that thought, she was lucky, it could be worse, she was lucky. She was. Lucky! Or was she…? Perspectives eh?!
So, 6 months of hell, and then we waited for that all important ‘R’ word… remission… It never really came. The doctors didn’t like to use that term… But they were always pleased with her blood counts and said there was ‘no evidence disease’ which was good enough for me… that was their version of the ‘R’ word. So, from September 2016 we tried to live a normal life… apart from weekly visits to clinic, that soon turned to fortnightly… we were normal again. Tilly went back to school full time as if nothing had happened… and we were making plans for an awesome holiday to Florida for Halloween, along with other weekends away, school prom, school residential visits…
But then Tilly found a lump again… another trip to the doctors to be told “don’t worry, it’s just a virus, it really is this time” Hmmm… my worries were in overdrive… another blood test came back and there was still ‘no evidence of disease’ which was reassuring. But why couldn’t I relax? Tilly was happy and healthy… Just like before… That’s why I couldn’t relax…it was all ‘just like before’. Another blood test was taken, and sent off routinely for more sensitive testing called an MRD, Minimal Residual Disease test. We were then asked to take Tilly for a bone marrow aspirate, and guess what… my nagging worries were right. It was back. Leukaemia…Not happy with being beaten the first time it decided to come back for another go… Again, my first thoughts were for her hair… stupid isn’t it… but I really didn’t want her to lose her hair again… it’s so upsetting for her, as it can’t be hidden, it can’t be an ‘invisible disease’ as 11 year old girls aren’t bald by choice So, back we go with our suitcase packed, to M3. Not a weekend away as planned, but back to M3… It felt like our second (unwanted) home. But this time was different… we had to find a bone marrow donor as well…. the doctors got on with their search… and Isaac was tested. We asked if he would mind and he said “Tilly can have all my bone marrow if she wants, I don’t mind, I want to make her better!” Awwww Fortunately he was a match… there’s only a 1 in 4 chance of a sibling being a match, and he was. Wasn’t Tilly lucky…? Or was she…Perspectives eh?!
Isaac was over the moon to be a match… although I think the biggest appeal was the fact that he got time off school. He was proud to be able to help his sister, which was lovely.Tilly had more chemo, and once again she changed her favourite flavour crisps and drink to something else… She kept a ‘positive mental attitude’ (most times…) and even wore her ‘Positive pants’
Then came the time of the bone marrow… Tilly had a gruelling week of ‘conditioning chemo’ and then we had a family night together, all 4 of us on M3… how weird… Not my ideal choice of venue and I don’t think it rates so well on Trip Advisor But it all went well… no reactions like we were anticipating (Tilly is allergic to plasma and had had two anaphylactic reactions to it before!). Isaac was fab… He struggled with maintaining his blood pressure afterwards but he discovered that he could wee in a bottle in bed, have chicken nuggets, chips and beans delivered to his bedside and stay laid down watching YouTube… life couldn’t get much better hahaha!
And here we are now… almost 3 months after the transplant… and we have just enjoyed a fab week away in Filey, which we didn’t think we would be allowed to do so soon after…
We are really lucky to be where we are… some people don’t have such luck…