Last week was Steven’s dental surgery, here’s what happened:
We had to arrive at the ward very early in the morning (6.00am) as Steven was going to be first on the list. A nurse showed us in to the day room and then checked him in, found him a hospital cotton gown and measured him for surgical stockings. Next the surgeons came to say hello and talk about what they were going to do. Around 8.00am the nurse said that they were ready for him in theatre, and off he went … When he was little he was allowed to have someone to go with him to hold his hand, but now he’s an adult he has to go alone. Having an anaesthetic is not easy for Steven due to his very limited mouth opening. The anaesthetist has to pass a tube through his nose while he is still conscious, and that is painful. They can only use one nostril due to the position of the dormant Rhabdomyosarcoma.
It was a long and nervous wait for Steven to come back from theatre. Unbeknown to us they’d delayed the start of his surgery as they’d had an emergency come in needing urgent attention. There was then a delay in Steven coming back to the ward as they were waiting for a bed. We were so pleased to see him when he did come back, and he was looking great for someone who had just had THIRTEEN teeth removed (including 2 wisdom teeth). He was white as a sheet, but he was up and about and at that time he didn’t want any pain relief. He’d been given a hefty dose of something while he was in recovery, but he does have a high pain threshold too.
The rest of the day was spent quietly and we were hoping he would be discharged in the evening, but it wasn’t to be. The maxillofacial surgeons said that he needed to stay overnight due to the risk of bleeding and due to possible swelling restricting his airway. Steven was a bit disappointed but we all understood why the doctors were being careful – better safe than sorry. The next morning he was sent home. When we left the hospital we considered jumping in an Uber, but the quote had skyrocketed from around £30 to almost £100! 🤯
Luckily Steven felt well enough to go by train on this occasion, but it is something we have to consider carefully, especially when he has little or no immunity.
It’s been a week since his surgery now and he has needed to take his pain relief meds. I cannot imagine how uncomfortable his mouth must feel. He is also feeling unwell because the pain is waking him up in the night. He’s also not able to eat normal food as he only has his front teeth left, and very sore gums.
Bone Marrow Results
The latest bone marrow test did show that there were some leukaemia cells in his body. He will be having another bone marrow test before his next treatment. We are waiting to find out what that next treatment will be. The doctors have some options needing approval, such as drug trials, but the ultimate aim is still a stem cell/bone marrow transplant. The search for a donor is still on, so if you think you could help, you can find out more from Anthony Nolan or DKMS.
We are very grateful to everyone who has supported us so far – you are all amazing! Until you are in a situation like ours you just do not realise what the financial burden is like, so when people contribute to our fund it is a huge help in challenging times. We started a Go Fund Me page, but we found that people were reluctant to donate as the fees are so high. Therefore, we have arranged two other ways you can make a donation online if you wish:
Even if you cannot donate, we would really appreciate it if you could share the Facebook link with your friends and family so that we can reach as many people as possible. This will also help raise awareness of his need for a transplant. Thank you!