Today: T+42

The past 10 days have flown … and i am pleased to say its because we have been having a great time!! The Graft Versus Host Disease, so far, is responding to high dose steroid treatment and the rash has gone. It comes back  a little bit now and then but applying steroid cream seems to calm it down. The treatment started at 2mg per kilo (seth’s weight) of Methalpred. He is now on 1.5mg per kilo which will be reviewed again in the consultant meeting on Tuesday. HHV6 Seth has been on treatment for Human Herpes Virus 6, which is a drug called Foscarnate. He tested positive for this and the level was 10 to the 5 in his blood. A week later he is now 10 to the 3. So it is improving. Another positive thing is that he has had no temperatures and he has not been symptomatic with it. Immunology The doctors are happy with his immune system so far. He still needs to be kept away from busy places and children. But we are able to take him to the park everyday and he went to the local museum during the week. Which he loved as there were Dinosaurs and fish like Nemo.

a hour at the museum

holding on to daddy

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51 thoughts on “Today: T+42

  1. lovetotrav says:

    I am so happy he is still doing better and that he got to the museum and to the park… a life outside the hospital is so wonderful. You can see it in his eyes. Beautiful pics. Lots of positive thoughts sent your way. Take care.

    Liked by 1 person

  2. Teresa mcdona says:

    I am very happy that Seth is doing good ! I love the pics ! Stay strong and I thanks to God Seth is getting well😀❤️😀

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  3. Carolyn says:

    Just amazing, I keep watching Seth’s progress and I am constantly amazed by his strength and wonderfully happy personality.
    You go Seth 😄

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  4. Mitchy (Michelle) Leinen says:

    He looks so good!!! I love the photo with Daddy. And his little hand that I can see looks so much better. How is the food tolerance? Still eating a couple of crisps here and there or is he back on Garlic Bread yet? I am counting down the days till your family can be in your OWN home and back in a real family routine. Hugs and Love from South Dakota, USA.

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  5. toby says:

    BOOM… this is great great news, this has put a huge smile on my face so I can only imagine how happy you are both feeling… Seth you are a SUPER cool little dude, keep going and keep getting stronger each day 😁

    Liked by 1 person

  6. Missy Washburn says:

    Amazing news! Really so happy to hear things are going well😊 Keep enjoying those days out and the freedom it brings! Hugs from Memphis,Tenneasee!

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  7. Archangel says:

    YAY!    I live in New Mexico and we have many dinosaurs out here.   If it is ever safe to send him dinosaur toys, let me know.   We all love dinosaurs out here.

    -Seth

    From: ourlittlehero To: paleopetra@yahoo.com Sent: Friday, June 12, 2015 1:37 PM Subject: [New post] Today: T+42 #yiv5237104387 a:hover {color:red;}#yiv5237104387 a {text-decoration:none;color:#0088cc;}#yiv5237104387 a.yiv5237104387primaryactionlink:link, #yiv5237104387 a.yiv5237104387primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv5237104387 a.yiv5237104387primaryactionlink:hover, #yiv5237104387 a.yiv5237104387primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv5237104387 WordPress.com | LJLane posted: “The past 10 days have flown … and i am pleased to say its because we have been having a great time!! The Graft Versus Host Disease, so far, is responding to high dose steroid treatment and the rash has gone. It comes back  a little bit now and then but ap” | |

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  8. mjk12345 says:

    It is so great that he seems to be doing better and is able to get out and about. He looks so happy to be at the museum with his dad. I remember when my 20 year old would light up like that.
    Best wishes for continued good news.

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  9. Sandy. says:

    Oh, I was hoping that was the reason we had not heard from you this week! I’m praising God, and thanking him for the blessings of good medical care, and healing! Praying for you all every day. Blessings, Sandy 🙂 Oh, it’s Friday, I’m wearing my yellow for Seth today! 🙂

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  10. Karin says:

    So happy for this so brave little boy – it’s great to have good news !!! A lot of positive thoughts from Tours / France !!!

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  11. Ivy First says:

    So happy to see that amazing smile on my newsfeed today. I think about you every day Seth and my kids are always asking for updates. You are amazing!

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  12. angelkhandra says:

    I am so happy to see Seth so happy and that he is doing so well! I think about him and your family every day and I am always happy to hear the updates. I am glad he is feeling so much better and that you all can have some FUN together! Finally! After all the waiting before the transplant and all the feeling icky afterwards, the world was waiting to hear all of this great news, and I am sure you are having such a wonderful time with your little hero!

    We love you so much, Seth! Keep on smiling your sunshiny smile! You are warming the hearts of the world, Honey!

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

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  13. Jeff says:

    Havent hear about Seth in a while and am glad the news is good. Its awesome he can start to enjoy the things that kids should be enjoying and Keep being strong buddy!!!

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  14. LoriDeFrias says:

    The smiles on Seth and Niks face put a huge smile on mine!. I am so happy that Seth is feeling better. I know the road ahead is long, I hope it is full of more fun adventures for Seth. Seth and your family are in my daily prayers!

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  15. Lois Clancy says:

    thank you for the updates. It is awesome to hear that he is getting to go out. Continued prayers from Texas and running every mile in Seth honor

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  16. Jane says:

    Glad to see such happy faces and to hear of your outings. Praying that he continues to improve. Could Seth get any more adorable? ❤️

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  17. Rebecca says:

    It is so good to see you out and about, Seth! You look so happy with daddy at the museum 🙂 keep smiling! You are such a strong little man xox

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  18. Sue says:

    Your latest post made my day! I am thrilled that your beautiful boy has shown improvement. What a strong, yet gentle and sweet boy. It is apparent from the photos that he adores his parents and baby brother Hugo. Seth- an awesome little boy warming the hearts of all who come to know him, up close or from afar. Amazing family!

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  19. lesliesantos says:

    So,so happy for you Seth!!!! I have you in my heart and prayers everyday. I love the smiling pictures of you with your daddy!! Brings an incredible amount of joy to me and my family.
    Love you little guy!!
    XOXOXOXO 💛💛💛💛💛💪💪💪👏👏👏👏👏👏

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  20. Jack Ricau says:

    This is such great news!!! I am so happy for Seth and his family. I continue to think of you all daily and keep him in my prayers.

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  21. Marie Rose Clemente says:

    Yey for Seth!! 😊 so happy to know you are getting better everyday. i pray for your continued healing in Jesus name..
    Keep that beautiful smile my dear baby Seth! it gives many people great inspiration including me. ❤️❤️❤️

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  22. Admira says:

    I am always so happy to hear some good news about Seth. I’d like to send him some presents from Bosnia. If you agree with this, just let me know the address.

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  23. Kristie says:

    Absolutely amazing little buddy! I am so happy to hear that you are doing better and spending some time out and about having fun with your family! Absolutely outstanding! My heart is smiling for you! Love and hugs from Kristie and Clayton!

    Like

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