I don’t think I’ve ever really considered myself an optimist or a pessimist, if I’m being honest with you. The main thing I go for is realism, always hoping for a good result but always ready to deal with whatever comes. It is what it is, I say, and move on. Moving on might mean it was a good result and we just continue our normal lives; it might mean more chemo or treatment; it might mean scans or MRIs or CTs. It might mean, as it did after the first relapse, two rounds of hard chemo and then a stem cell transplant.
In my last blog, I mentioned that the stem cells used in the transplant were donated by my brother. He spent most of the day lying down on a bed in the adult day ward, connected to a machine with a needle in both arms – one to take the blood out and the other to take the filtered blood back in (I think, I didn’t see this part) – to collect the stem cells. The GCSF injections he’d been receiving over the past few days had been helping his marrow to produce more cells so the chance of needing more than one cell collection was reduced. It’s why they do the transplants on Thursdays, in case something goes wrong with the collecting of the cells or the transplant itself. Thankfully, my brother produced an amazing number of cells in that first collection – enough for a transplant and then some, which would be used for Donor Lymphocyte Infusions (DLIs) to further consolidate the transplant. The cells were taken down to the lab for counting a dividing for later DLIs, frozen in liquid nitrogen.
The actual transplant itself was rather anticlimactic and frankly, quite boring so I’m going to go back a bit to all the preparations for the transplant that are probably going to seem just as dull. Anyway, here we go!
I think I already mentioned the mountain of blood tests that both my brother and I had to have done. First for the tissue typing but then to check overall health and that there were no illnesses like STDs. This was more of an issue for my brother as I had a Hickman line to take the bloods from while he had to have peripheral blood tests; however as he has veins that show significantly through his skin compared to my weedy non-veins, I struggle to feel sorry for him.
After all the blood tests, we had an appointment first with a consultant specifically for my brother to make sure he was donating completely under his own will and not being coerced. I believe this involved him signing some lovely consent forms. Then the plan for his GCSF injections was discussed – district nurses from our GP surgery would come and inject him twice a day for four days to prepare him for the donation. The consultant warned him that the injections might make him feel achy as more cells that he was used to would be growing in his marrow. I wasn’t at home at the time, but I can imagine his complaining was wonderful to hear. Not the type to suffer in silence is my brother. And, of course, he continued to work heavy shifts while having the injections so I’m sure the aches were compounded by tiredness too.
Other preparations I had to go through included a heart echo, a pulmonary lung function test and a kidney function test. These all occurred in the weeks before the transplant and I’m gonna take a wild stab in the dark and say they weren’t the best results ever recorded, especially since at the time I was getting out of breath going up the stairs.
Another preparation was for the total body irradiation (TBI) that made up the bulk of my pre-transplant conditioning. For twice a day, first thing in the morning and last thing at night, I would be taken down to the radiotherapy centre and made to stand in a strange looking glass box with a bicycle seat built in for “comfort” or support or something. But before that the radiologists needed to get all my measurements so that session could last the shortest time possible. Part of these preparations involved a CT scan which they used to create a metal plate of my lungs, tattooing the exact middle point between the lungs on my front and back with a tiny black dot as a reference point. This was kind of cool because I was getting a tattoo before my 18th birthday. Not so cool because it was literally a dot.
This is what I was doing while my brother had his GCSF injections. The days before that I had a big IV infusion of Cyclophosphamide. I remember having this infusion and then sleeping for the entire day on Halloween, which was a Saturday. My dad always used to come and spend Saturdays with me when I was in hospital; my mum subsequently went home to do washing and other ‘mumsy’ stuff she wouldn’t let my dad do. When I was on the regular TYA ward, these Saturdays were great – we’d watch movies (mainly Pulp Fiction, which now I cannot stand from watching too much) and play board games (I think he let me win a lot haha) and then he’d cook us curry in the TYA kitchen. Our Saturdays weren’t quite so fun when spent in isolation in Room 4 in the Bone Marrow Transplant part of C6. There was a freeview TV, some cupboards and a fridge for food, a cupboard with various parts of games in and a few chairs – one comfy, the others less so. A wet room too but only to be used by the patient to prevent any infection. This meant my mum had to ask for the key to the visitor’s room every day; sometimes they remembered. My dad never stayed overnight so he never had that problem.
Having someone stay in the room with you while having a transplant wasn’t, at the time, the done thing. Baring in mind that most of the people the nurses and doctors were used to dealing with were like normally over fifty, grumpy and probably a lot more willing not to question what they’d been told. I wasn’t the first transplant patient from the TYA section but I have no idea what the other parents, if applicable, did but my mum wasn’t going to not stay with me. She’s a right mighty mouse when you get her going.
Eventually they gave her a camp bed and put her under similar restrictions to me, although she was allowed to leave the room provided she adequately cleaned herself on the way back in. She avoided crowded areas where there were likely to be germs, largely just leaving to shower and get food, all the time wearing a mask to protect herself a tiny bit more. It was a thrilling time for us all.
A final thrilling thing to mention before I get onto the actual transplant is that I’d been referred to Poole Hospital a few days before with severe knee pain and a temperature. An X-Ray and then an MRI confirmed the diagnosis of Avascular Necrosis (AVN), which is a condition when the bones don’t receive enough of a blood supply and start to die. Another term for the disease is Osteonecrosis which literally means “bone death” in latin. This was just the kind of news I needed before my transplant. And what’s more, the doctors in Poole thought they found some kind of bug in one of the lumens of my Hickman line. Days before I was due to go to Southampton to start conditioning.
When we eventually got to Southampton – on time, thankfully – we had an appointment with my consultant. The orthopaedic doctors had recommended a treatment of absolutely no weight bearing for six weeks then another MRI to see whether my knees had degenerated significantly, which meant I was wheelchair bound for the foreseeable future – i.e. my transplant. My consultant told me I had to do the TBI standing on the little bike seat regardless as that was the only way they could do TBI since the LINAC rooms were not big enough for full body radiotherapy when lying down. And I needed the TBI to have the transplant. After being told that my knees could collapse on themselves, I was not happy about this news. However, that it was then compounded by the announcement that my Hickman line would also have to come out was very upsetting. The fax report from Poole had been misinterpreted, and as my consultant understood it there was infection in both of the lumens of the line, instead of one minor one that may have been picked up from the skin. My reaction – and my mothers – must’ve seemed very overreactive to my consultant. I thought he was completely overreacting and he must’ve thought I was an idiot. See, I may at this point have been afraid of having a line removed and replaced while not under general anaesthetic as is the protocol for paediatrics, exacerbating the issue (I’ve since gotten over this).
So, a stem cell transplant – sounds exciting, doesn’t it? It’s not. If you’ve ever had the privilege of having or seeing either a blood or platelet transfusion, then you’ve pretty much seen a stem cell transplant. In fact, any sort of IV really. Just stem cells are a really pretty colour, a really nice mix of blood red and platelet mango – like a pleasant looking cocktail. And it only takes about half an hour to quarters of an hour. I think we all actually forgot about it until one of the nurses came in to check.
It didn’t cause any massive changes in me; I didn’t grow like seven feet or change eye colour. But the new cells take time to acclimatise and all the conditioning I’d been going through was supposed to wipe out my immune system enough that there wouldn’t be much resistance. Because like any transplant, you’re replacing part of yourself with someone else; people always assume stem cell transplants aren’t like other transplants like live or heart, are less serious, but rejection can still kill you and you’re still on tablets for life after. It’s just general ignorance because the immune system isn’t so much an organ, after all.
But once you’ve had the cells, you’re started on a regime that’s designed to best initiate engraftment of the cells to the marrow. I had been told that the engraftment process might be felt (you can tell through the blood levels like a rise in neutrophils etc) by day fourteen or so at the earliest, so day fourteen became my target. By the way, the day you receive your new cells becomes Day Zero and the days of conditioning were Days Minus Numbers. I guess it’s like a rebirth in a way; I will always remember the fifth of November, but perhaps for different reasons than everyone else. Anyway, you immediately go on to a drug called Cyclosporin. This drug is vital in lowering the risk of Graft versus Host Disease (GVHD) which can affect several areas in the body at varying severities. It is, as the name dictates, where the body’s new cells start attacking the body’s original cells and can be lethal or debilitating. The doctors like for a patient to experience a small amount of GVHD as it shows they the new cells are fighting any potential leukaemic cells left (Graft versus Leukaemia, it’s called) in the body but never too much; I never got any anyway.
They also give me little pulses of IV Methotrexate. I have mentioned previously and brief about having a Methotrexate neurotoxicity, so my mother was absolutely freaking out over this. I was perhaps a little more concerned about the mucositis that I had basically been guaranteed was about to be coming my way until my neutrophils decided to reappear. For those that don’t know, mucositis is basically where you get ulcers really badly throughout your mouth to the extent that talking and eating hurts. I think at one point I was on a morphine pump because yes, it really does hurt that much.
Since they expect the mucositis as standard practise, they try to get an N-J tube down your throat as soon as they can after the cells. For me, it was the day after. A perfect nice, experienced nurse offered to do it and I thought I’d just get it out the way. I have an awful gag reflex. It did not go well. It went in on Friday and I threw it up, having to pull this tube out of my nose, on Sunday. The problem with an N-J tube that separates it from an N-G tube is that there’s some of the tube left outside of the body that supposedly gets swallowed down into the gut when you eat unlike the N-G that just goes into the stomach. But I could always feel that little bit of outside tube and it put me off food completely; I’m pretty sure it’s what made me throw it up, to be honest. After that, they had to use TPN which is like synthetic sugary food but my neutrophils started rising on Day 11 I think so I resumed eating pretty quick after that.
The nurses said that if I kept eating well and drank enough each day, swallowed my vast amount of tablets and was careful, I could go home soon. So I did that. I ate. I drank four of their 750ml jugs of water a day. I had every single bloody tablet. When I was allowed outside the room, I always wore a mask and avoided populated areas. I was a model patient. The main reason people were sent home later is because they didn’t drink properly. When I kept nagging them, the doctors had no excuse to keep me in anymore. I got out in 21 days, right in time for Christmas.
Initially – maybe just the first week actually – we had two appointments. One on Monday with a Specialist Transplant Nurse who just generally did a check up and a blood test, and a clinic appointment on Thursday at the Transplant Clinic where, again, bloods were taken, the Hickman line was freshly dressed and we saw the consultant. These clinics were not necessarily always busy but they took time. Each part of the appointment was separate – so you never just had your line done and immediately then saw the consultant – and significant waiting was involved between each. You firstly got given a number as to your line dressing or blood test appointment (bloods can be taken through the line) and then your notes were put on a metal table outside the offices of the consultants’ for them to pick up after their appointment was finished. The wait was always annoying but understandable, since they gave the appropriate time and attention when it was your own appointment. And some people had some serious problems; you just had to learn to wait your turn. We’d had to wait for paeds clinic appointments too, although those appointments were always more fun.
We went every week; no real changes, no signs of GVHD, no real problems. We were allowed to come every other week. Day 100 arrived and a bone marrow soon followed it. A good result – and 100% chimerism with my donor (meaning our cells had merged completely) and no sign of leukaemia in my bone marrow. Still, to consolidate this result it was still decided that I was to undergo a regimen of Donor Lymphocyte Infusions (DLIs) which are basically like mini transplants to boost the cells you already have and potentially incite GVHD. As I was a high risk patient due to my CNS relapse, they had planned some prophylactic lumbar punctures too just to keep that at bay.
So that kind of became our routine of 2015: we’d go to clinic appoints when directed, go have DLIs every few months, along with bone marrows every three months and the occasional lumbar puncture. It was during this time after the transplant that I completed all my coursework (don’t tell the doctors that I went into a contaminated school building several times in this period) and got an offer for my first choice uni, culminating the year with getting 3 great grades, an acceptance in my first choice and just generally looking forward to my one year anniversary of being post transplant. Quite a few others that I was friendly with on the TYA had also had transplants in this year, and though a few had not made it, I still felt largely hopeful for the future.
And then it all turned to shit.
I’m really sorry this has taken so long to publish! I wrote half of it like two weeks ago – just genetically lazy probably. You’d think I’d have all the time in the world to write these kind of things, but they’re actually quite tiring to write. I enjoy doing them, I do, but sometimes you just can’t focus. And I was going to write more on Sunday but I ended up with a quick stay at the hospital, which I’ll probably mention in the next one, Part 3. It will likely be the final part of my little saga. Anyway, enough about me. I hope people are still enjoying these. Don’t be afraid to comment or ask me anything. Have a lovely day!
P.S. Sorry for the swear.