Henry’s story: “Lock-down has stopped us being together as a family”

Just as the pandemic took hold across the country, Henry was diagnosed with AML. He was only 5 months old. That was 207 days ago and he’s only been home since for 36 days in total. His mum and dad have been swapping being in hospital in order to both be able to also spend time with their other child who is 4. Today (Sept 29^th) is Henry’s 1st birthday and he’s spending it in Addenbrookes Hospital. Henry’s mum Callan shares their story:

We noticed the weekend before Henry was diagnosed that something wasn’t right. He had some lumps on his head, he’d had them for a couple months, since the February. We’d been to the doctors and he’d said its where is skull was starting to fuse together, and that it was causing soft tissue peaks. Then, Henry got flu-like symptoms, which we dismissed because his older brother was at nursey and he’d not that long ago had his 16 week injections. He also looked like he had a blocked tear duct on one side of his face, his face was all puffy. We were just going to take him back to the doctors on the Monday, still thinking that he still had the flu. Calpol wasn’t working, or anything like that. I’d gone to my mother in-law’s house on the Saturday after dropping Theodore, Henry’s older brother, off at a birthday party, and she said she didn’t like the look of him and wanted to take him tour local A&E which was Ipswich. She’s a critical care nurse, so I said to her, if she really wanted to go, we’d go. And she was insistent.

When we were at A&E she kept pushing the doctors, she was saying ‘no look at the lumps on his head, they’re not normal’, and said they’ needed to do some bloods. The doctor said that he doesn’t have a squishy face, he said he’s got Bell’s palsy on one side his face. He was completely paralysed on one side of his face, he wasn’t able to make tears and he wasn’t really blinking properly. The side of his face where we thought there was something wrong was actually his normal baby face, it was just looking very squished. It was very gradual, we didn’t really notice it. Like the lumps in his head, they were so gradual too, there wasn’t just one that came up overnight, there were little ones, and it didn’t seem urgent. He seemed well in himself until the week he got diagnosed. He was feeding fine, he’d not lost weight, and he was trying to sit up. He was just a bit grumpy. All normal for a five month old. He was sleeping lots which seemed fine as he was ill.

We got admitted to the paediatric ward at about 4pm, they said they were going to keep him in overnight and give him some antibiotics. I thought, brilliant, that’s probably exactly what he needs, it’s probably just a virus. I’d gone up to the ward and James came later with an overnight bag for me because I hadn’t expected to be staying in. James was with us until the end of visiting hours, and after that finished they pulled us into a room, it was about 8.30pm, and they told us that Henry had leukaemia. They told us they’d be moving us to Addenbrookes in the next couple of hours, but he needed an x-ray and a CT scan first. We were picked up by the ambulance at about 10.30pm that night, and we were at Addenbrookes by midnight that same day. It was a very quick process. It didn’t feel real. I didn’t bring him there to find out he had cancer.

The next morning (Sunday 8^th March) they came to see use at about 8.30am and said although they didn’t know what type of leukaemia he had, he’d be having his Hickman line put in that afternoon. They took him down at midday, and he was back with us at 1.05pm, and then he actually started chemo at 8.30pm that night. So within 24hr of being diagnosed, he was starting his first round of chemo. It was so quick.

We’d arrived at Addenbrookes, which is 70 miles away from where we live, on the Sunday, and the first two nights we were there, James was able to sleep in the parent bed, and I was in the hospital bed with Henry. Then they sorted James out with accommodation during that first week. So we were able to both be there, and our oldest son Theodore was at pre-school, and we’d arranged for him to go on a series of playdates and sleepovers, but then they closed everything down because of Covid.

We were told he’d need to have four rounds of chemo over six months. At the beginning, when Henry got diagnosed, we didn’t come home for two weeks because it was just so far, and we had ten days of extensive chemo. Henry was five months old at the time so I couldn’t leave him because I was breastfeeding.  We have a four year old, who we had to pull out of school before the country went into full lock-down. So for us, Lock-down basically been hell. We’re lucky that my mum has been working from home since before lock-down, so she’s been our babysitter for Theodore. So has my father in-law who is retired.

The second round of treatment was really hard, he had a lot of temperatures and threw up a lot. I think that was the round that made him the poorliest. We experienced everything in those first two rounds. We were put in a barrier room because they thought he might be contagious to other children, he was on an artificial feed because he’d given up breastfeeding and we didn’t take a bottle. He didn’t have an NG tube originally but was given one because he wouldn’t take his medicines in his milk.

Since Henry was diagnosed 207 days ago (on 7^th March 2020) he’s been home for 36 days in total. It’s been a nightmare. Lock-down stopped us being together as a family. He was diagnosed right at the beginning of lock-down. The hospital went into lock-down on 23^rd March, so we gradually things changed. At first people just weren’t allowed to congregate in the corridors, you had to wear masks, and then it went right up to the extra parent not being allowed on the ward on a Wednesday morning.

Henry’s brother Theodore is 4 years old. He’s OK now because we’re both home for the week, and his brother’s home, but his behaviour has completely changed. I’ve spoken to other parents and it sounds like all the kids are going through something similar. He’s really anxious, he’s afraid we’re going to leave him, he’s afraid to sleep alone. He follows you around the house.

At the hospital just one parent can be there are a time and you can’t swap every day. Parents have to stay on the ward for 7 days before they swap. We had special permission to swap every 5 days but with school returning, we now swap every 6/7 to allow for the same parent doing drop off and pick-ups so Theodore doesn’t feel abandoned or anxious about is leaving behind his back. James and I were apart for the whole of July, which is the longest we’ve ever been apart in the 7 years we’ve been together. It was hard.

We’re really lucky, we’ve got a really supportive family. James’ parents live a mile down the road, so they’re close, and my parents live about 15 miles away. They have picked up food shopping for us, and keep our freezer stocked up. My youngest brother just went to get school uniform bits for Theodore because I can’t go out.

We started the last round of chemo on Monday 17^th August and Henry will be spending his 1^st in hospital, which is on 29^th September. I didn’t know going into AML that you don’t leave hospital until your counts are great after chemo, and that can take up to 35 days. It’s very intensive. You’re basically just stuck here.

It’s great when Henry is home, he and Theodore just act like brothers, and you wouldn’t know they’ve been apart, which is lovely. They both just get on with it. Henry’s doing lots of firsts and milestones in hospital such as crawling, I missed actually that because I wasn’t there. And Theodore has missed all of these moments. Henry’s such a different child now to when he was diagnosed. He’s so strong and just wants to be on his feet the whole time. When we’re home it’s so innocent, it’s lovely to have two kids again and it feels like nothing bad has happened.

Even when we’re home, Henry has to go back to hospital about two times during that week, but thankfully we just need to go to Ipswich for those appointments. It’s about 20miles but it’s not as far as Addenbrookes.

Our CLIC Sargent social worker is Rich. We’ve not met in real life but I think we first had contact two weeks after Henry’s diagnosis. It sucks I can’t see him face to face. It sucks I can’t see anyone face to face – anyone who can help with my children or us, they are all online resources. I hope I can meet Rich soon.