T+89

A little while since my last post. Apologies for that.

However, we can now say Seth is no longer an in patient at The Great North Children’s Hospital!!! He was discharged on Thursday last week so is permanently living at the halfway house near the hospital with Daddy, Hugo and me!!!!


  
  
Seth is settling back into family life well and has FINALLY started to eat. It is very small amounts and not everyday, but he is eating and has a good relationship with food. He is no longer getting anxious about sitting at the table or being around food. Last week we did homemade Pizza which he loved making! This was the start of him eating more, he did not eat his slice, but did eat the ham off the top. A couple of days later he ate the meat and gravy part of Shepherd’s Pie, and today he has had some yorkshire pudding, vegetables and gravy! We are really pleased with his progress. Its hard not to pay attention to him eating, we have to turn away to hide our big grins! He seems to have started eating more as we have stopped the intravenous nutrition, as he is now feeling a bit more hungry. He still has a 14 hour feed of high calorie milk over night, as we cannot risk him losing weight.


  
Being at the halfway house more and school finishing for the summer holidays means that we have had a bit more time to do things. We have been to a local centre for disabled children called the Alan Shearer Centre (founded by a local footballer/soccer player). Here we can hire out sensory rooms or their hydrotherapy pool, and they have an outside play area which, so far, has not had any children playing on it so Seth has been able to use it. We are not at the stage where he can use the hydrotherapy pool just yet. But we used the sensory room which was great for both boys. They had a brilliant time.


  
  
  
  
  
Medically Seth is doing really well, hence the discharge! He is still positive for the HHV6 virus but the level is still low so it’s not a major concern at the moment. He is no longer positive for the Adeno virus, although that has come back once. He is still on the drug that treats both of these so hopefully they will remain under control until his immune system can deal with them itself.

Seth’s skin is amazing still. The GVHD rash appears to have gone and we have been able to stop one of the anti-rejection drugs. He is still on steroids as a management but only at 2.5mg on alternate days – the lowest he has ever been on! He is on a third anti rejection drug called Tacerolimus but he will stay on that for a while after transplant. The next step is to ‘stress’ test him (medically) to see if he is able to produce his own steroid. Because he has been on steroids for so long (about 4 years) his body may have stopped producing it – which means he would need to remain on oral steroids at the current level to match what the body naturally produces.

These next pictures I found this week. They are of Seth 1 year ago! What an amazing transformation!  
 All in all his progress has been brilliant so far. It is hard not to get over excited about his future, but we are certainly more relaxed about things. The next major worry is whether or not his thymus will educate the T cells his bone marrow is now producing. If it does that will be a MASSIVE relief for Nik and I. If not we have to look at a Thymus transplant at Great Ormond Street Hospital. I don’t know what that entails at the moment as I am hoping it will not be necessary. They will test his T cells around 120 days post transplant so see what is happening. So another 34 days to wait!

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43 thoughts on “T+89

  1. Missy Washburn says:

    Utterly amazing! Thank you so much for the update👍 Seth is truly a marvel and I am so happy for your family! Will continue to think and pray for you all in this journey. Hugs from Memphis, Tennessee

    Liked by 1 person

  2. Hayley says:

    An amazing transformation indeed! Such a difference – apart from that lovely smile which is always there! Well done brave Seth, his amazing family and medical support. Xx

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  3. Kim Houchins says:

    Great news!!! You all remain in our prayers. I was just thinking today it had been awhile since the last update but ” no news is good news” kept popping in my head. So glad I was right.

    Liked by 1 person

  4. lesliesantos says:

    This has to be the most touching, awe-inspiring update for me to read. God has truly blessed your family. I am so thankful and blessed to be a part of your family’s journey. We so love your family.
    XOXOXOXO 💛💛💛💛💛

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  5. Meg says:

    Wonderful photos of two gorgeous guys. It’s a joy to see them both enjoying each other’s company so much and having a great time with the simple pleasures of childhood. xxx 😍 💞

    Liked by 1 person

  6. angelkhandra says:

    The beauty, joy and happiness in these photos of your lovely boys just brought me to tears! I think what someone said in a post awhile ago was that Seth is so adorable “he should have his own holiday!” I hope I quoted that right! I agree! I am so happy to see the incredible progress in his healing and I hope it continues. I love that he is now able to enjoy his brother and to enjoy just being a child! Oh, that little boy just deserves everything good! So happy for you all!

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

    Like

  7. Jemma Cabral says:

    So very happy to see the latest update on Seth and your whole family! Seeing the difference of how he was when I started keeping up with your blog earlier this year through today is truly miraculous. I will continue to keep all of you in my thoughts in prayers for continued good fortune as the journey continues. – Jemma

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  8. Olivia says:

    Such great news. Full time in the halfway house is huge!!! Ah those days were great. Next step home!!!! That will be a great step and an anxious one. Having the comfort blanket of the hospital is difficult to leave but all good. Seth looks utterly amazing. This is great news that he’s off one of his anti-rejection drugs. I swear it’ll come when you don’t remember the name of most of them and now they are a huge part of your life. Oscar is still on one and I only remember about 2 others. I think he came home on 10 or 12!! You are amazing and with the support of your family you will all blossom at home. One thing I did was put a notice on our door, when we were all tired, asking for no visitors. A bit cheeky but in the early days we needed that. Huge love to you all x

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  9. A nne says:

    Great news Seth! We are so happy to hear you are sprung and feeling well. Continued prayers to you all for these blessings and enjoy the big (if sanitized) world and your family

    Love,
    Your friends across the “pond” in Connecticut!

    Like

  10. Lesley says:

    Awesome news!!! Lovely to see Seth and Hugo bonding and playing….. These photos made me smile. So happy for u all. What an incredible journey you’ve all been on and seth is one brave wee boy. Total trooper xxx

    Like

  11. Marta says:

    We’re so happy to read these news!!!Also here in Italy Seth, and his Family too, has got under the skin of many mums! We all love y’all! Thank you!!!! Big Italian kisses!

    Like

  12. Adriana López says:

    I’m happy for Seth!!! he is so strong, keep going boy

    El Domingo, 26 de julio, 2015 15:40:39, ourlittlehero escribió:

    #yiv2315677840 a:hover {color:red;}#yiv2315677840 a {text-decoration:none;color:#0088cc;}#yiv2315677840 a.yiv2315677840primaryactionlink:link, #yiv2315677840 a.yiv2315677840primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv2315677840 a.yiv2315677840primaryactionlink:hover, #yiv2315677840 a.yiv2315677840primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv2315677840 WordPress.com | LJLane posted: “A little while since my last post. Apologies for that.However, we can now say Seth is no longer an in patient at The Great North Children’s Hospital!!! He was discharged on Thursday last week so is permanently living at the halfway house near the hosp” | |

    Like

  13. Jyotsna Wase says:

    You deserve every bit of happiness, Nik and Leanne. Your boys are awesome. And well, Seth is a star – the to-be nuclear physicist 🙂
    Have fun raising them and please don’t forget us 😀 A ‘Seth’ update a day keeps us all happy and gay!

    Like

  14. Mitchy (Michelle) Leinen says:

    I don’t think it could be any more possible for those boys of yours to get any cuter!!! That top photo of Seth and Hugo, so ADORBS!!! Seth’s eyes are absolutely stunning. What can I even comment on in this post. Such and amazing day. The only thing that makes me sad(and it’s a good thing) is that we don’t see as much of Seth anymore. We think of him and continue our prayers for him every single day. I did buy him and Hugo the Minion bath towels Leanne. Where should I send them now? If I send them to the hospital will they still get to you? Much love and lots of hugs from South Dakota, USA!

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  15. Liz Jolie says:

    Dear Seth and Family — We are so happy to hear how well Seth is doing and to see his pictures ! Seth you are a Rock Star !! – And so are your Parents ! Much Love ! Liz and Dollie-Bee Dog

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  16. Roxana says:

    So happy to see Seth happy in his new home with his family. Seth’s mum: Can I still send him a letter to the hospital address you gave me before, would they give it to him? Thanks and much love from Peru.

    Like

    • LJLane says:

      Hi Roxana. Unfortunately we can not have post sent to him at the hospital anymore as he is not there. But thank you very much for the thoughts and and the offer.

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      • Paula says:

        Is there anyway u tell is mom and dad we all love them all and ask her is there a new website for seth to see how he is doing. I’m so happy he is home now.

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      • Paula says:

        Thank u so much. My kids and I pray and think of seth and ur family. My son is 9 years old and he asks me everyday if I know how seth is. Give him our love 💛💪💛

        Like

  17. Sandi Warner Burk says:

    I am SO HAPPY I came on to check for an update on Seth and all your guys! A Miracle with a lot of help has occurred and Seth just glows now! I cried looking at the pictures of his progress and marvel at how strong Seth has been because of the love you’ve all surrounded him with! Tell Seth he’s always in our hearts and on our minds because he’s such a Special Hero and wonderful example of being so brave while going through so much. He has a wonderful role now being a Big Brother, and Big Brother’s are very Special people! Hugo will get on his nerves as little brother do but he will grow up looking up to him always and learn so many things from Seth that he has learned! What handsome boys you have and thank you so much for posting and sharing with us when you probably just wish you could sleep for a year. God bless you all and thank you for allowing me to be a part of your exciting Journey!
    ❤ Sandi in Yreka CA U.S.A. ❤
    (((( 0—————-0—————–0 ))) Big Hugs for Seth and Hugo

    Like

  18. Paula says:

    Getting very worried have not heard anything on seth and how things are going…my family and I thing about him alot. My son is 9 and he ask about seth everyday. Plz give him our love.

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    • LJLane says:

      Hello. Thanks for your message. He is doing well. It’s been pretty static recently so I haven’t had much to say, but I will be posting an update in the next couple of days- of course there will be pics as well!! Thank you

      Like

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