Today: T+54

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.

Graphs

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.

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27 thoughts on “Today: T+54

  1. Missy Washburn says:

    Wow! The letters are wonderful to see! He is the Seth heard round the world! An inspiration to us all 😊 will keep prayers going and fingers crossed you reach the next step soon. Love the pictures 👍 Hugs and support from Memphis, Tennessee!

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  2. Allie says:

    So happy to see brave Seth doing so much better!!! I love reading the post of his progress and seeing the wonderful pics. How infectious is that smile ?!!! it’s obvious that everybody finds it infectious as well ! Hope Stevie gets better also ! Love from Los Angeles

    Liked by 1 person

  3. Mitchy (Michelle) Leinen says:

    The news about Stevie breaks my heart. However, those letters are just absolutely amazing. That is quite a deal having your government officials writing Seth. That is very, very special. The new today sounds really good as far as the food. He will get there. It will just take time. And I’m sure he is a ball of energy after feeling like rubbish for so long it must be wonderful for him to be full of life again. I don’t know if you and Nik see it, but I do seeing that I only get observe from photos, but our little Seth looks like he is certainly “growing up”!!! He looks taller!! Home I’m sure is a word you would like in your vocabulary daily. I just know it will happen soon. Hugs and Love from South Dakota, USA!

    Liked by 2 people

  4. Sandi Warner Burk says:

    Seth is our Hero in every sense of the word as he has opened our eyes to a World most of us had never heard of. The “Love Blanket” that has been formed by caring Hearts around the World is thanks to Seth and his wonderful dad, mum, baby brother Hugo, and everyone else that helps him keep that handsome smile we love to see. To see anyone suffer is tough but to see an Angel suffer is really rough and Seth is an Angel that has really been tested all his life! Being a rebel Angel once in a while is necessary because all of our feelings aren’t good ones and we need to vent sometimes! I’m just thankful we have the words “I’m sorry” and “Please forgive me” because I’ve used them a lot myself!

    Liked by 1 person

  5. Lesley says:

    What an impact Seth has had on people….. Another great update and nice to see the letters and see the amazing support Seth has. And it makes me so happy to see his improvements and see him having fun. Everyone just wants him to keep improving. I personally love reading his updates. Seth might not know the world just yet but it seems the world knows about Seth lol….. Wee trooper!!!!! 🙌💛💛💛💛💛

    Liked by 1 person

  6. angelkhandra says:

    Seth is such an amazing and inspiring little boy! Every time I see that smile it melts my heart. I hope his beloved Stevie gets well and that Seth and he will be reunited soon. Keep it up, wonderful family – Seth is so lucky to have you! Love and hugs to you! And I am so happy to hear about his bouncy energy, although I know how tiring it can be for parents, sometimes! But so much better than feeling rubbish for so long. Your sweet little boy is just such sunshine for this world! He is so loved!

    Love from Kari and Kimo the dog in Minnesota! 💛💛💛

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  7. Nay says:

    Just seeing his picture and reading how well he’s doing, melts my heart and leaves me thanking God for having brought him this far.
    Hang in there little buddy, I don’t think God’s finished with you yet.
    Love and prayers for the whole family from NC/US

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  8. Arjun says:

    Every time I see an update I see how much things have changed in nearly 2 months now from when he started getting Chemo. i extremely fondly remember him saying “Yesh” when you asked him about if he did Nuclear Physics ( For everything else he was vigorously nodding ). I really hope I see SETH the Nuclear Physicist. SETH’s parents – thank you for bringing him in my life. SETH – how i wish i could cuddle you now???? Science has helped out lives in multitudes unimaginable and chemo is nuclear physics used in such an amazing way. SETH – our bubula my nuclear physicist. Awaiting the day when i get to see you, and dreading the absence of frequent updates. SETH – much love.

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  9. Mel Hunt says:

    Seth you are truly inspirational, as are your brave parents who write your blog with such candour. If wishes could make you well you would be so so well as your story touches everyone’s heart. Keep fighting young man, you will be carried forever in my heart and prayers x

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  10. Michael says:

    So Happy for y’all we will continue to pray for Seth. he looks so happy in the museum pics
    Sending prayers and love from Alabama.

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  11. Lori DeFrias says:

    What a sweet and thoughtful gesture from both gentlemen to acknowledge all that Seth has been through and continues to fight for. Seth is such an amazing little boy who clearly has touched the hearts of so many. His infectious SMILE has spread world wide!! Sending Love and Prayers !!!!!

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  12. lesliesantos says:

    Awe so happy for the update ! Our family was discussing him this evening at dinner and how amazing his journey has been. We loved seeing him with Hugo tracing his face through the shield. What a sweet sweet treasure. What a journey this has been for you all. Such a beautiful example of love and commitment to follow. Love seeing Seth grow in stature. And looking so much healthier! We’re so sorry to hear about Stevie. We hope the tumor is benign. Continuous love and prayers to you.
    XOXOXOXO💛💛💛💛💛

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  13. Alli Healy says:

    Just want to let you guys know that I am O-, and would be more than willing to provide a second/third/forth bone marrow donation if need be. I am in the States- Texas to be exact, and healthy. If Seth needs anything of that sort, I am (hopefully) one of many who have volunteered to provide bone marrow for him. My heart goes out to him and your family. If you would like any further info please contact me- my email is provided for this post but also just contact me through this feed. So happy that he is doing (day by day) much better. Love to you all. ❤

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  14. Cathy says:

    Wow!!! Those letters are wonderful!!! Seth is a real life celebrity/superhero!!!! I. Love all the good news and smiling pictures! Warms my heart so! My family just returned from the IMMUNE DEFICIENCY FOUNDATION. NATIONAL CONFERENCE in New Orleans, LA. They said it was a wonderful experience. I hope the news for Stevie is good. i too want Seth to see him again. Prayers continue for you all. Love from Ohio in the USA

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  15. vegeterin says:

    I’ve been following this story for a while (like everyone, haha), and I just wanted to stop in and say what an amazing little boy Seth is! I’m always humbled by the resiliency of children, and by your son in particular. His story has really touched my life, and I’ve been doing my part here in California for him. My little sister even organized a day at her school for everyone to come in wearing yellow, and so many people participated!

    I truly hope for the best for Seth and for you and your family. You guys are all wonderful!

    Like

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