It has been a long time since i have posted. Apologies for that, life has got in the way.
I can not believe that 2 years ago today Seth made it to transplant and he got ‘the magic’ from his daddy. The difference in him in those 2 years is unbelievable! I don’t think Nik or I ever thought we would be raising a ‘normal’ boisterous cheeky child – who hasn’t been hospitalised with illness in OVER A YEAR!!!!!! – that would never ever happen! We spent 5 years in hospitals, just thinking this was how parenting was. Knowing nursing staff on sight, where as now I doubt the nurses in our local hospital would recognise us!
So Seth – medically is doing really well. In terms of his immunology he is fine! Great in fact! He has now had all of his immunisations (he had to start all over again as if he is a new born) and has managed them fine. We are also now on ANNUAL visits to the Great North Children’s Hospital!!!!!!!! – in 6 years we never thought this would ever be possible!
He had period where he suffered with a sickness bug. For two or three days he was ill, but recovered well. Although, he stopped eating and it took us a few days to get him back to eating anything. This worried me and I was anxious that we should be ringing the hospital. However, he came out of it and is now back to eating EVERYTHING in sight – which is another first for us as he has always been fussy with his food. I think his taste buds are finally recovering from the years of steroids and the chemo. He is trying new foods and enjoying them, he is looking forward to certain types of food for the first time ever! So for those of you coming out of chemo and going through that phase of being desperate for your child to eat and not understanding why they won’t eat the slightest thing – don’t worry – eventually they will! People told us this, but at the time it seemed like there would be no end. That Seth would always only eat ham and pretzels! But now he loves Chicken Curry, Fajitas, a roast dinner, lasagne – all sorts of sauce based food! Only recently has he been able to eat sweet food. Seth has never been partial to chocolate or anything sweet, however, in the past few weeks he has started to ask for sweet treats! This is something we are trying to manage well as we don’t want his teeth rotting away – especially when the dentist has been so pleased with the quality of his teeth because he had not had sugar!
Seth is growing as well. He is still small for his age, more like a 3-4 year old. However, he is finally growing! I have had to buy new shoes and clothes for him because he has grown out of things- I have never had to do this before! (well only previously because the steroids made his belly so large that I had to buy a bigger size in tops!). His legs have also grown and he is much more in proportion. He is still on a night feed of milk to help with his calorie intake (and hopefully growth).
Physically Seth is improving all the time. A few weeks ago he walked to school for the first time. It was his request and we didn’t think he would make it the whole way. But he did, and he really enjoyed it! He does have a bowing to his legs where his bones that go into his knee joints have grown at different speeds – so the outside has grown faster than the inside causing his lower leg to come out at an angle rather than being straight. We have been to a specialist about that and they have noted some improvement so are not going to interfere at present. I can also see an improvement as he is running and able to do small jumps now, where as previously he couldn’t do that at all.
All in all his quality of life is infinitely better than what it was 2 years ago and we have The Great North Children’s Hospital, the nursing staff and doctors on Ward 5 and of course Andy Gennery and the other immunology consultants who worked so hard to get him through transplant.
Although things are going better than expected, you still get your worries, the niggles that you have developed over time worrying about a child with health problems. However, they aren’t as strong and less frequent. Life becomes fun again and planning for the future doesn’t require the careful planning and commitment that it once did. Seth has ongoing battles to face in relation to finding his place socially and catching up educationally. He missed so much as a child that he is not as developed or sophisticated as his peers and it is hard as a parent to watch your child try and figure his way through this maze. He wants to socialise with peers his age, but he is smaller and not as mature, but then children younger than him he struggles to understand and accept their unpredictability. Educationally he struggles sometimes but he is catching up so hopefully he will get there. We will do what we can do to support him, but unfortunately these things we can’t do for him.
I am afraid this is likely to be my last post on here. With work, family life and another baby on the way I am struggling with time!!! Thank you to every single one of you for the support you have shown Seth over the past 2 and a bit years. You can never know how much it helped us help him.
Leanne, Nik, Seth and Hugo.
This is how Seth has been spending some of his time since transplant!