As time goes on and Seth still receives gifts and letters in the post and messages through various media wishing him well. We feel grateful for all the support he has received. This week has brought a new surprise. A letter from our local Member of Parliament, and a second letter from the Prime Minister, David Cameron. It is nice to know that Seth’s story has been heard by so many and will possibly help others dealing with Primary Immune Deficiencies and/or Bone Marrow Transplants.
As I have previously said, the Bone Marrow Transplant Unit at the Great North Children’s Hospital is supported by The Bubble Foundation, an incredibly small but amazing non-profit set up to support children with Seth’s illness, Severe Combined Immune Deficiency. However, the unit transplants children who suffer not only with immune problems but any other difficulty that can be cured or helped by a bone marrow transplant, such as leukaemia and childhood arthritis. These children also benefit from the great work of this charity. Speaking to other families on the unit also opens your eyes as to how different every journey through transplant can be. I have discovered that with leukaemia a small amount of Graft Versus Host Disease can be a good thing as it can prevent the leukaemia from returning, which is the exact opposite of what we hope for with our transplant! As there has been so much interest in the charities supporting Seth I will do a blog entry (separate to this one) highlighting the support we have had so far. Also I have been contacted by quite a number of families who have themselves been through the bone marrow transplant journey and I thought it would be nice to have a blog post dedicated to helping families prepare for transplant that everyone can add their experiences to. Again this will be added in a separate blog.
Seth in himself is continuing to do really well.
Eating – He is still not eating consistently but on Monday he had half a yorkshire pudding (i am not sure if our readers from outside of the UK will know what that is – but we have them with a roast diner …. and they are amazing haha) and a floret and a half of broccoli. Today he had 2 plain pasta shells.
It doesn’t sound much, but his attitude towards eating is improving. We know he does not have a great relationship with food, so we have made a sign for his room door asking people not to come in if he is eating, and if they need to, not to mention the food. If people talk to him about it even if it is just “o you are having something to eat!” you can see him shut down and become anxious. He will then refuse to touch the food. Today, however, when his pasta arrived he gave a big “Whoop!’. So it is slow progress but if we can make food for him like it is the rest of us we will have won the battle i think.
He is still having milk feeds over night to give him nutrition alongside intravenous nutrition. The milk feed is now running at 23ml per hour, 4 hours on 2 hours off from 5pm to 7am. They have reduced his intravenous nutrition to 10 hours, so he has all day off his lines now other than the odd short medicine or blood/platelets if he needs them. He is still vomiting daily, and this increases when we increase his feed, but seems to settle down 3 or 4 days after.
This means that we are now waiting for a halfway house! Seth won’t be able to stay overnight but can be there during the day – which I really think will help his relationship with food – especially as Hugo LOVES eating!!!
Also I think having a bit more normality will help Seth psychologically. Over the past few weeks his behaviour has been getting a bit difficult to handle. He is not a naughty child, never has been. But he has so much energy he is bouncing round the room, switching from one activity to the next, not concentrating and pushing boundaries. It does not help that British Summertime is not to be seen and its raining everyday at the moment. We did manage to get him out on Monday to the museum again though. Which he walked round on his own showing me everything he loved.
Unfortunately, our family dog, who Seth loves SO much, has a tumour behind his liver. They don’t know if it is cancerous or not at the moment so we have no idea what will happen in the future. But Seth has been so interested in what is happening. He asks questions about blood tests, and needles and has made Stevie (the dog) 2 get well soon cards. Hopefully Seth will be able to see Stevie again.
Health wise, this week things seem to have improved slightly. The HHV6 virus is showing less in his blood and the Adeno virus that he was positive for last week is now negative. So the drug he is on for it appears to be working.
His skin looks great this week. The GVHD does seem to be flashing up now and then but I think the frequency is less, and it only flashes up for a minute or so and responds to the cream. Fingers crossed that this is as bad as it gets. I really hope so anyway.
I thought I would post pictures of the graphs I have been keeping so I can monitor his progress.
Platelets. These are still dripping quite quick, but he is not needing transfusions as much as he was.
Neutrophils. these have been up and down but remain in an ok range. i would like to see them go higher though.
Red Blood Cells. These are maintaining much better than they were as you can see (the rise is when he has had a transfusion) he is not needing these anywhere near as much as he was.
So our journey continues… i would love to live a week or a month at a time…..and go home…..i really miss home… but we are still a journey away from that…and still taking it day by day.