Diagnosis: Burkitts Lymphoma

Friday 31st May. We arrived at Great Ormond Street after what felt like a forever journey. I was utterly terrified as we were walking into the building. Its a feeling u can’t describe well, like you are watching it from the outside, like its not happening to you, but it is.

We walked into the room, and were met by a couple of nurses Izzy and Aoife. Everyone was so kind. It’s strange how Paul and I have actually got very little recollection of this first day, we have talked about it a few times since and I can only think it must be shock. The nurses we came to know so well, we couldn’t even remember that they were on shift that very first day, I can remember very little about conversations or what we even did or what happened. It’s just a fog, both for Paul and I.

A wonderful registrar called Melina came to see us. I swear this woman kept me sane for the next couple of weeks. Just below being qualified as a consultant, she had so much knowledge on Artie’s condition, but she still had all the lovely kindness and compassion of a nurse for example. She was like a fluffy consultant, and believe me, I needed that. She told us that they believed that Artie had Burkitts Lymphoma and that first thing the following morning Artie would be down to emergency theatre to have his Hickman line catheter fitted (a long plastic flexible tube that is fitted underneath the chest wall skin and into the large vein draining into the heart). They would take a biopsy of the mass in his tummy to confirm diagnosis, and also do a bone marrow test to see if the cancer had spread to the bone marrow. In addition to this, they do a CNS (spinal) fluid aspiration to test that for cancer, and also give a dose of chemo into the spinal fluid. An NG tube would also be fitted into his nose (a tube in his nose that goes to his stomach) to help with feeding as they told me he would become too ill to eat or drink.

It was all moving so fast, I had only found the lump a couple of days ago, however Melina explained that burkitts is a very aggressive and fast growing cancer, it can double in size in 24/48 hours so working fast was imperative. If left, it can be fatal, fast.

That Friday afternoon, we had to take Artie in for the ultrasound and CT scan. To say I found it traumatic was an understatement. The ultrasound Paul took Artie down for on his own, I didn’t want to see the lump again. Then came the CT but I didn’t really know how this worked and had to force myself through the fear to do it, I couldn’t send Artie into the unknown without his Mama by his side.

The CT scan, if anyone hasn’t had one or doesn’t know what they are, are like a big round ring, with a bed lying inside. Artie had to lie on the bed, which he was so frightened he didn’t want to, and they had to inset a special bright yellow contrast dye into his hand cannula. This dye helps highlight body tissue to show up more clearly on the scans. Paul and I had to wear these very heavy lead aprons and neck collars before we could start. The nurses, Melina and the radiographer have to stay in another room with a big glass window to see us. Artie had to lie on the bed and we had to hold his arms up each side. The ring on the machine starts spinning really fast, it was louder than I expected, the bed zips in and out of the machine quite fast, I found it very frightening and Artie was absolutely hysterical begging me to get him out. I was literally sobbing at his side holding in down watching his frightened face, it was just awful. In the end I was so hysterical that a nurse and Melina (who were standing behind the glass room) came in and took me out of the room. I stood in the corridor and just sobbed so loud, just so loud saying “I don’t want him to die”. I knew there was a ton of people outside in the waiting room and I just didn’t even care, it is honestly like for this first week no one else even exists. Melina was so kind and she just said, he isn’t going to die, he is going to get through this, it will be ok. It didn’t feel like it would, it was so incredibly scary, not to mention feeling guilt at leaving Artie when he needed me most. I knew I need to pull myself together, and fast.

We came back to the room and for that night only (only one parent can stay), Paul stayed with us. I woke up the next morning and Paul was in the bathroom and I could hear him crying. It really made me sad because you almost don’t have the capacity to worry about anyone else when your child has cancer, your baby is all that matters and I just hadn’t even given Paul a 2nd thought. We dressed Artie in his little hospital gown and took him down to theatre.

We walked into the theatre waiting room and looked at the poster on the wall and to my disbelief it was a poster of the body and blood system, and its name at the top was “ARTIE BEATS”. I never come across any children called Artie so it was mighty strange to see it on the wall just before he entered theatre. I was so confused. It felt like a sign from somewhere, someone. I only hoped it was a good one, someone telling me it was going to be ok.

We took Artie into theatre when we were called, and I felt sick to the stomach, they were putting my baby out to sleep, what if he didn’t wake up, what it brought even more bad news, what about all the awful side effects we had to sign for, including death. Artie didn’t really understand what he was there for, we held him in my arms and they gave the special white medicine into his cannula, he instantly fell asleep in my arms while the tears were flowing from my eyes and they took his tiny floppy body off of me and onto the bed, and I had to leave the room and leave my baby behind in the care of these complete strangers.

We were told to come back to his room and wait. it would probably be about 1.5-2 hours. I honestly didn’t know what to do with myself and I just put a blanket over my head and hid for the entire time he was gone, I couldn’t speak to anyone or do anything, I was literally counting the minutes until he came back.

When he came round they had inserted the tube into his nose and he was so angry, he just kept rubbing his nose and getting so frustrated with the new tube. He was really distressed and just upset not understanding why he had woken up with this thing in his face. He still had the cannula in his hand at this point as they couldn’t remove it until we had tested the new Hickman line was working.

His swollen tummy after the biopsy

We sat around and eventually our consultant came to see us. He suggested leaving Artie with the nurses and following him to the parent room. My heart was thumping so hard, and I was already worrying about why we were being taken to another room, was it really bad news like you see on the TV when people get taken somewhere else to receive terrible news. We walked into the parent room and I immediately noticed a leaflet on the table “Choices: when it seems there are none”, I immediately looked at the window and thought, I’m going to jump out if this is bad news. It was probably irrational looking back, but it was so new and frightening. He told us that they had analysed the cells from Biopsy and that they had confirmed it was Burkitts Lymphoma and they were starting chemotherapy that afternoon. He told us it was a very treatable cancer. I asked how I could have not seen the lump and he explained it grows so fast, doubles in size in 24/48 hours so it would have appeared very suddenly.

We went back to the room with Artie and Paul’s Mum and my sister had come up to the hospital. I sent Paul out first with his mum so he could get a break and I stayed at the hospital with Cheri. After that Cheri and I went for a walk and something to eat. It was honestly like walking out onto another planet. I felt like I had a paper bag on my head, or under a personal raincloud, I had nothing much to say, and I was just watching all the people going about their normal business laughing and chatting and enjoying their lives, I just wanted to shout “But my son has cancer, stop everyone!” It was the first taste of how life just carries on when your world is falling apart. We walked around some shops and saw a man shouting at a shop assistant over there being a pair of pants missing from his pack he had ordered online. Honestly. I felt like screaming at him. I wish that had been the only thing I had to deal with. my heart was broken and this fool was bickering over a pair of pants. I was so angry, at everyone just living their lives as normal. I managed to eat some food and realised I hadn’t eaten a thing in days. I knew I had to force myself as I couldn’t risk becoming unwell for Artie while he was so vulnerable.

When I went back, the chemo had started. He was having a protocol called R-COPADAM and R-CYM. This was the COPADAM Pre phase and we were told they it needed to shrink the tumour 30-50% in order to move onto the R-COPADAM cycle 1. So this was it. It was happening. All I could do was hope and pray that it would work.