T+234….HURRAYYYY!!

So time has been ticking and the days seem to be flying by. Seth is still doing really well. We have all been ill in the house, except Seth who has been fine!!!

In the past month Seth has started back at school! It is only 1 hour a day for a one on one session with a teacher. But he loves it. It has given him more energy and his behaviour at home has improved.  The teachers are really pleased with him and say he is very dedicated. However, when I collect him each day and ask him what he has done he says “I don’t know”! 
  
However, you may notice that he has a cast on his foot in this picture….Seth broke his leg. Another side effect of his complicated health history and long term use of steroids has led to him having osteoporosis. So his bones are very prone to breaking. He was running down the hall to me and just slipped. He landed funny on his leg and unfortunately caused a very small fracture. Luckily he only needed the cast for 2 weeks. But he was happy and walking on it a few days after having it put on (with the permission of his doctor!!!)

  
Immunology wise the numbers are continuing to go in the right direction….and…..finally….we have evidence that the thymus is working! There are educated T cells now coming through. The numbers are still low but it’s a start. 

All of his bloods look good at the minute and finally he is getting his appetite back. I never thought I would get excited at Seth saying “mummy my tummy is rumbling”. 

The one thing that is worrying me at the moment is that his skin has gone a little dry. The hospital say that this is because of the change in weather and that his skin is still very sensitive. But with Seth’s history I automatically started worrying about GVHD again. 

Also his hair is thinning. He has lost his eyelashes, although there are some new short ones there, and his eyebrows have thinned. A few months prior to him being admitted this time he was losing his hair. So again I started to worry. But Seth’s doctor again thinks that this is more related to his body having been through a trauma that it is still recovering from. Reminding me that it is only 6 months since his body had to battle very hard, and that major changes are still happening internally. 

I guess that’s the struggle with a bone marrow transplant- you don’t see the changes, it’s not like they have a scar on their chest as a reminder of the transplant. 

So, I’m trying to remain positive. The champagne is still in the fridge, but I am not ready to open it yet ๐Ÿ˜‰

Halloween- Surgeon Seth

 

Building a tent and watching an iPad with a snack   
Christmas is coming and Seth is very excited!!!   

Showing off the big muscles he has from all his eating.   

    

The first book from his advent (he doesn’t like chocolate and sweets so we do books)

  

70 thoughts on “T+234….HURRAYYYY!!

  1. Naomi says:

    We do books as well! My daughter does not like sweets but loves unwrapping a new book to read nightly. I love his little bit of blonde hair in the middle of his forehead. This post brought tears of joy! Merry Christmas and open that bottle on New Years! You deserve to have many celebrations! Cheers from Canada

    Like

    • Michelle says:

      So happy to hear he is going in the right direction. I continue to pray for him and your family. Seth is an inspiration as he always has the biggest grin on his face. Even after getting his cast! What an optimistic, resilient little man. I look up to him. Merry Christmas to your family.

      Like

  2. margaret says:

    wonderful to see Seth looking so improved, and to see that cheeky grin too. Lovely photo of you and the children. Keep looking at the big picture, Seth has come so far. x

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  3. Sandy Pityk says:

    Just look at that happy, handsome fellow! ๐Ÿ™‚ I love all those happy smiles with Mummy and brother Hugo. How thankful I am that Seth is doing so well. I’ll continue to pray for all of you!

    Like

  4. Louise kirk says:

    Hi Set. Your an amazing little boy so glad your doing really well and bubble foundation are fantastic my 8 year old was there glad you never lost your smile xxx lots of love Louise Adam and bailey xxxx

    Like

  5. Lori DeFrias says:

    Oh my gosh Seth, school? How exciting! So sorry to hear about your little foot, but happy to see that it has not slowed you down one step. I love seeing the pictures of you having fun, and playing with Hugo. (My favorite picture is you showing your BIG muscles โ€“ WOW!!!!!!!!!!!!!) You and your family are always in my prayers. I hope you all have an AMAZING Christmas!

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  6. jackeroo13 says:

    Fabulous news, great to see him doing so well , we saw Seth in the day unit Friday where we were also having checkup with AG. So pleased his t-cells are working, we are still waiting for them to increase! Have a lovely Christmas xxx

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  7. Elizabeth Sloan says:

    I am so happy to see that Seth is doing so well. He is in my prayers nightly. I pray that he will soon be completely well. So excited that he likes books and school. He will do great things.
    Sending love:)

    Like

  8. Lena says:

    Wow Seth! I am so happy to hear you are doing well! You must be the cutest and the strongest child i ever seen! I wish you the best christmas and a happy new year, you deserve it so much!
    Big hugs from Norway ๐Ÿ˜

    Like

  9. Amy says:

    It’s so lovely to see a happy Seth pop up on my facebook newsfeed with good news from mum! From having a look at your blog since wear yellow for seth became apparent, this little boy deserves the world and more for his bravery! I don’t take my daughter for granted for one second and Seth just confirms that family is EVERYTHING every time I read the updates. You’ve all been such an amazing family and from your updates mum….sounds like you could now be a doctor yourself, you’ve educated yourself brilliantly on the terminology and it just goes to show how strong you can be, and that a parent’s love for their child never gets in the way of anything. Hope I keep seeing a smiley Seth on my facebook feed and I wish you all the best, have an amazing Christmas! You deserve it!! xxx

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  10. Meg says:

    Hi Seth, your looking great in your photos and wee Hugo is getting so big as well.
    I just love your hallowe’en costume, you look like a real surgeon too with all that blood on your scrubs, and your muscles are definately getting much bigger with you eating a lot better.
    Won’t be long now until Santa gets here and I hope you and Hugo get lots of nice prezzies.
    I would send you a wee card but I’m not to sure where to send it so I’ll just say to your Mummy and Daddy, wee Hugo and yourself to have a wonderful Christmas and a very Happy New Year filled with everything you could all wish for. God bless you all. ๐Ÿ˜ƒ โ›„๏ธ ๐ŸŽ… ๐ŸŽ‰ ๐Ÿš•

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  11. Michelle says:

    I love seeing updates on Seth, he’s such a courageous little fella. I remember seeing the boy in the bubble documentary a few months ago, seeing everything that was thrown at him, yet he fought it all with smile after smile. So happy for you all, happy Xmas Seth and family, keep on smiling ๐Ÿ™‚ X

    Like

  12. Kristen says:

    SETH!!!! DUDE!!!! You look fantastic! Merry Christmas from Texas! I hope you and Hugo and your Mommy and Daddy have a happy holiday!

    Like

  13. Missy Washburn says:

    I have read this over and over with your good news! The pics are great and you all look wonderful! Your boys are growing so much ๐Ÿ˜Š Your family has had quite the year and I am so happy to read such a positive post. Really hope this is a wonderful Christmas for you all! Prayers and hugs from Memphis, Tennessee ๐Ÿ‘ And of course a thumbs up!

    Like

  14. Deborah O'Farrell says:

    Seth looks great and Hugo has gotten so big. I was the same with Ciara, every little thing was a worry, and you expect everything to be normal straight away and forget that they need time to heal and recover from all they have been through and that it will take a longer time than we expect but they are strong resilient kiddies and they will get there, no matter how long. Delighted to hear all is going well and he is enjoying school. Don’t worry, my 5 year old doesn’t know what he’s been doing all day in school either!!

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  15. Jenn says:

    This post once again brought a massive smile to my face and warmed my heart!! I always look forward to these updates…somehow Seth has grabbed onto a piece of my heart, and I find myself wondering how he’s doing from time to time! I know I’m not the only one feeling this way ๐Ÿ™‚
    Continuing to wish you all the very best and am hopeful you will have a very Merry Christmas!

    Like

  16. Mitchy says:

    He looks amazing and it all sounds amazing. As far as his hair loss, trauma in any human can cause thinning hair. I see people around me daily that had health issues and their hair has gotten thin, but on the brighter note, it does come back!!!! You and Hugo look wonderful as well. You have come so far this year and it is still hard for me to fathom that this growing young man, is the adorable little boy holding the cards up for the world to see and asking us to wear yellow. God Bless you all and very Happy Holidays to You, Nick, Seth, Hugo and of course Stevie!!!! Hugs from South Dakota, USA!!

    Liked by 1 person

  17. Marita Healy says:

    Seth is looking so happy and healthy. It is wonderful to see. I feel for you when you are seeing concerning changes, such as hair loss. Hopefully it is just down to all the trauma his little body has been through. Have a wonderful Christmas. You have all been through a tough year and deserve every happiness. I pray that you will continue to find the strength to deal with the challenges ahead – I hope that the worst is in the past and that you can enjoy your two smashing little boys, who are a credit to both of you. Lots of love and thanks so much for keeping us updated. I look forward to every post, especially when Seth is doing so well.

    Liked by 1 person

  18. Mari says:

    I’ve been following Seth’s progress since early this year, just before his transplant and at those times I had prayed so much that he could recover and just do things little boys do. His beautiful smile makes me truly happy, he seems like a wonderful guy to be around. I hope he can make up for the lost time and have tons of fun in school.

    Like

  19. Danon Bauer says:

    Such an amazing boy! So brave and strong! And how handsome and beautiful the smile! Thank you for the updates. I always love to see he’s doing so well. Bummer about he leg, but he doesn’t let anything get home down. He’s gonna beat all of this. Love and continued prayers for you and your precious family.

    Like

  20. Leslie Santos says:

    Wow! So stinking excited for you Seth that you started school! I love seeing all the new pictures with you looking so smiley. It warms my heart to no end!! Praying for you Seth! Love you little guy!
    XOXOXO๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›

    Like

  21. Leslie Santos says:

    So happy to see you so happy!! I love seeing these posts. I’m completely joyful that you get to go to school now Seth! I love your idea for advent being books not candy or chocolate! Awe you just warm my heart. Love you little guy! XOXOXO๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›

    Like

  22. angelkhandra says:

    I’ve been wondering about my hero, Seth, and here your post appears! I continue to think about Seth and I hope that everything continues to improve. He is a wonderful, shining little boy whose cheeky little grin warms my heart over and over!

    Seth, my Dear, you are a ray of sunshine in the world! I am so, so happy you are doing so well and enjoying finally being able to attend some school! Happy, Happy Advent and Christmas to you and your sweet little brother and family! We will be thinking of you, Sweetie! And I am so glad you love books! Books are awesome!

    Love from Kari and Kimo the dog in Minnesota! ๐Ÿ’›๐Ÿ’›๐Ÿ’›

    Like

  23. Emma Appleton says:

    This is my favourite news I’ve heard in a long time. My 5 year old’s favourite trick is to say “I don’t know” when I ask about school… I hope you and the family have a magical Christmas and I’m very much looking forward to the next up date!

    Like

  24. Lauri Wayne says:

    So happy to hear Seth is making such good progress! Hang in there! Merry Christmas to you and your family!
    Lauri in New Hampshire, USA

    Like

  25. Nay says:

    Continuing with the prayers. I want people to see that God still performs miracles! They may not come immediately, but this is where your faith steps in.
    Love and hugs
    NC/US

    Like

  26. Kathryn Rosia says:

    Mrs. Lane, Thank you for your uplifting update on Seth and all of the lovely pictures. He looks so happy and healthy and I love that little guy! I love Seth Lane! He has grown so close to my heart. Kathryn Rosia Post Falls, Idaho U.S.A. โ€‹

    Like

  27. Lesley says:

    Always smiling!!!! Loving his hair!!!! His white hair is like his little trademark!!! Very cool!!! And Santa coming soon – nobody deserves it more than Seth ๐Ÿ’›๐Ÿ’›๐Ÿ’›โ›„๏ธ๐ŸŽ„๐ŸŽ

    Like

  28. Barb Lane says:

    Hi Seth: My name is Barb and I have been enjoying the pictures. They are all so colourful and always make me happy. Your smile makes me smile!

    ourlittlehero wrote:

    > a:hover { color: red; } a { text-decoration: none; color: #0088cc; } a.primaryactionlink:link, a.primaryactionlink:visited { background-color: #2585B2; color: #fff; } a.primaryactionlink:hover, a.primaryactionlink:active { background-color: #11729E !important; color: #fff !important; } /* @media only screen and (max-device-width: 480px) { .post { min-width: 700px !important; } } */ WordPress.com LJLane posted: “So time has been ticking and the days seem to be flying by. Seth is still doing really well. We have all been ill in the house, except Seth who has been fine!!! In the past month Seth has started back at school! It is only 1 hour a day for a one on one s”

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  29. Iain says:

    Great to see Seth’s progress & that he’s now able to go to school. Our 5 year old says the same thing when we ask him what he did during the day! Hope you all have a lovely Christmas.

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  30. Iain says:

    Great to see Seth’s progrees & that he’s now managing to get to school. Our 5 year old says the same thing when we ask what he did during the day! Hope you all have a lovely Christmas

    Like

  31. Sue says:

    Uplifting. Beautiful. Awesome. Amazing. Words will never capture the “awesome-ness” of Seth or the monumental inspirational impact that he has on all that are blessed to know him or know of him. What a wonderful family. May progress continue.

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  32. Calley Findley says:

    This is all so Great and makes my heart happy! He looks so good and happy. I will continue to pray for healing and strength inside and out. I will pray his bones gain their full strength back as well. Thank you for the update.

    Calley Findley

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