Today: Bare with us.

Today we had a chat with the Professor on the ward. Seth is continuing to spike very high temperatures and his liver enzymes are high. His breathing rate is up (meaning he is working a bit harder), but he is currently maintaining the oxygen level in his blood on his own. The doctors are worried about him, but we need to continue to transplant as if we delay it’s likely he will get something else.

So today he has started the prep for the op. The graft he has now has come back and is causing problems with his blood and skin. He is needing blood transfusions everyday. So he has had a drug called Campath today which wipes his immune cells. So hopefully that will help him a little in terms of his blood and skin.

He is now on two treatments for the HHV6 and we really hope that these start to work soon.

Transplant was always going to be tricky, but it’s now even more tricky and when a Professor says they are worried, you know it’s time to worry. So we have a hard few weeks ahead and we may not get round to posting updates or responding to your amazing messages. But your support has been amazing and helps us deal with what’s ahead.

However, he is still playing with his fire engines and paw patrol toys, he’s watching crafts and keeping his dad and I on our toes. If anyone can do this Seth can!

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67 thoughts on “Today: Bare with us.

  1. Missy Washburn says:

    We will continue our prayers and support for you from here…you are all doing an amazing job for your son. He is your hero and I know it cannot be easy to be strong all of the time. Lean on us out here….we are all in your corner! Hugs from Memphis, Tennessee to you all 👍👍👍👍 Be well Seth!!!!

    Liked by 1 person

  2. Teresa McGuire says:

    Stay strong! I know how it is to have a sick child and now am disabled. You are truly an inspiration to mothers everywhere,Seth is one courageous little boy,,he is truly a little hero.May God watch over you and your family in the coming weeks. I pray for a safe and successful transplant. God bless you and your family!

    Liked by 1 person

  3. Judith says:

    If I was a religious person, I would probably pray, but instead I will just cross every finger and toe that I have for your amazing, little boy and for you, over the next days. Get well, little Seth, loads of love and good vibes from Paris! And a big load of courage for your mom and dad, not that they’d lack of it, but a little extra can come in handy 🙂 All the best, I know you can do this, little super hero!

    Like

  4. Edna Kinsman says:

    Sorry to hear that things are hard just now. Please know that myself and many of my friends are willing you on Seth. You’re a wonderfully strong wee one and your smiley face brightens my day. Stay strong and help mum and dad stay strong as well. Keep smiling, you’re a wee star. 🌟🌟

    Like

  5. Alisha Sansom says:

    I really hope he gets better.. I love seeing his smiling face every time I get an email.. Tell him to keep smiling because we all are rooting for him. God Bless

    >

    Like

  6. Janet says:

    Thinking of you all. Sending the biggest heap of love, support and best wishes. I truly hope that all goes well for Seth.

    Keep strong.

    Like

  7. Josephine Lai says:

    seth and parents,
    It’s hard to read your message tonight, it makes my tears falling down. I’m not a good prayer before , but I’ve been pushing myself to pray every night for your family and I know I have to do it better now. God is good, Seth will stay strong, and your family too.

    Liked by 2 people

  8. toby says:

    You are a super cool kid Seth, always got a smile on your face despite everything that’s happening, I hope everything goes well with the transplant matey

    Like

  9. Lyn Neville says:

    Go Seth, what an amazing “little man”. I had Campath in 2005 and I was 40 odd and it knocks you sideways, it is truly nasty stuff. My heart goes out to you Seth and all your family. Keep fighting and one day you can look back and wonder if all this really happened as time will heal. Get Well Seth !!

    Like

  10. Elevendaleks says:

    I’m thinking of you and sending my prayers to Seth. He looks like a strong little guy,I’m sure, everything is going to be alright! No wonder he seduced the whole world with his beautiful smile and his big determination. Be brave, believe. I’m sending you a lot of love and positive thoughts from the south of France. xxx

    Liked by 1 person

  11. Erme says:

    I usually don’t comment on things like this, as I feel it’s somewhat impersonal since we are strangers by nature. I have been following your story ever since last month, when I caught wind of the #wearyellowforseth campaign; and for some reason, your boy has struck a chord with me. Reading about his strength and seeing his adorable smile truly makes my day. There just seems to be such a joy about him, despite everything he has and is going through.

    Thank you so much for sharing your story, family, and courageous Seth with us. He really is a hero, and I am continuously sending happy thoughts for brighter/healthier days for him– he deserves it. All my love from California 🙂

    Liked by 2 people

  12. Michele says:

    Praying for him god bless him and your family routing for Seth thanks for the updates crossing everything I can cross for him.

    Like

  13. Lesley says:

    Every day Seth I think about Seth and hope he’s ok….. Really hope the next few weeks go well. I seen a post you wrote where you said there are so many twists and turns so here’s hoping things twist and turn for the better….. I want nothing more than for him to get better and enjoy his life…. Sending loads of love your way / I just wish I had a magic wand. 💛xxx

    Liked by 1 person

  14. Jessica Popp says:

    Wishing you all of the best in the coming weeks. I pray that God puts his hands to work along with the Doctors in the coming weeks and that Seth is able to grow strong and come home. I am so moved by your story and I think about Seth constantly. I find myself wearing yellow a lot more often than I did before because I like to think that it gives him strength. I’m all the way over in St. Louis, Missouri…so hopefully knowing that you have supporters all over the place will help…what they always say is true..strength in numbers!

    Liked by 1 person

  15. Sophie says:

    If anyone can get through this then it’s our brave hero Seth, keep fighting little man, we’re all behind you 100%. Lots of hugs to you all xx

    Like

  16. Lynn says:

    Thank you for sharing your precious little boy with all of us. You are truly a remarkable family, and I wish you the very best of outcomes. Much love from Niagara Falls, New York!

    Like

  17. Jessica faber says:

    What an incredible little boy. I think about your family often and marvel at how you manage to pull it all together. I know there is so much “behind the scenes” and I for one, thank you for putting in the effort to let everyone in on your journey. On #wearyellowforseth day, I showed his video to the boys I nanny and we spent time talking about kids in the hospital, and I saw that seeing Seth up on their TV, and knowing THAT was why they were wearing yellow, made a real connection with them.
    We wish joy and laughter upon you all everyday!!

    Liked by 1 person

  18. Margo says:

    This is only going one way…and all the prayers are making this happen…Seth your smile is the million dollar smile!!! We are all wrapping our arms around you…This will be successful!!

    Like

  19. Nic says:

    Sending love and support from Christchurch New Zealand. Your story has really resonated with so many people and I am hoping that your beautiful boy gets well soon x x

    Like

  20. Rutuja bari says:

    Little hero your smile says it all..that you are going to go make through all of this so easily our little warrior…cutie stay strong it’s all in your favour already..sending you loads and loads of love and wishes❤️

    Like

  21. Susan says:

    From one SCIDS kid to another – BIIIIIIIG HUGS, BIG SMILE and the prayers of my soul.
    God bless and heal you, Seth. You are a shining light and a beacon of HOPE for so many people. Keep smiling! And we will all keep praying for you.

    Liked by 1 person

  22. Cathy says:

    My eyes fill with tears as I “hear” the concern in your words. My prayers for Seth continue. He is such an adorable inspirational little boy andi hope he gains strength from all the love, prayerss, and well wishes coming to him from all over the world. We are kindred spirits of sorts, I shared with you about my grandson with multiple immune deficiencies, he is undergoing infusions as well, and has yetvto be fully diagnosed. I imagine that is part of what drew me to Seth’s story originally. I think of you all daily. Much love~

    Liked by 1 person

  23. Mitchy says:

    I can’t even imagine how worried you and your entire family are. I pray so many times a day that the Lord will bless the world with a Happy, healthy little Seth Lane very soon.!! I love you Seth!!!

    Liked by 1 person

  24. Jyotsna Wase says:

    You’ll see, Leanne. In just a few weeks from now he’ll be sitting in his playroom playing with his paw patrol toys and reading fireman sam books. The boy is going to fight and fight harder. He’s family to all of us now. Love him beyond words.

    Liked by 1 person

  25. angelkhandra says:

    I’m thinking about you, Seth, and hoping you are able to stay strong! Love from the whole world to you and your family! You are a fighter, Honey. I know you can make it!

    Love, from Kari in Minnesota (and Kimo, the dog!)

    Like

  26. Marshall says:

    Seth can do this. He is so strong and such an inspiration. I watched paw patrol for the first time. Just for Seth. Had to see what the fuss was about lol. I have wrote before but want u to know your family is still into thoughts. Every once in a while I learn about life from someone and reading about Seth and seeing his pictures I have learned to smile a little more. 😀

    Like

  27. lisatagaloa says:

    May the transplant roll around quick smart with nary a hitch and nothing but success!! How your son manages to smile through everything that befalls him is testament to the strength of his heart & soul and by extension, those of your family. What an amazing lot of beings you all are xx

    Like

  28. Cristine H says:

    if only i can take all the pain away for you little fireman. I’m holding back my tears every time I’m reading update of your condition, I’m praying that God will heal you and that He will strengthen you everyday.. Keep fighting angel we are here praying and waiting for that vibrant smile.. You have Us in prayers… Huggs and kisses for you sweetie… I love you.. God Bless you

    Like

  29. SHARON HOWARD says:

    WE AT MENARDS IN CLIO MICHIGAN ARE STILL PRAYING FOR SETH. I MADE YELLOW RIBBONS WITH THE PICTURE OF FIREMAN SAM ON THEM AND PRINTED ON THEM “I’M WEARING YELLOW FOR SETH” EVERYONE AT MENARD ARE WEARING THEM AND KEEPING THE PRAYERS COMING. I FEEL LIKE I KNOW SETH PERSONALLY AND MY HUSBAND ALWAYS ASKS IF I HAVE HEARD ANYTHING ABOUT SETH, JUST LIKE HE KNOWS HIM TOO. SETH YOU HAVE A WHOLE LOT OF PEOPLE OUT HERE THAT LOVE YOU AND ARE PRAYING FOR YOU. KEEPTHE FAITH AND TRUST IN GOD. LOVE YOU SETH.
    SHARON HOWARD CLIO MICHIGAN

    Like

  30. Cristina says:

    My heart goes out to you, Seth! I hope everything turns out well for you. What a strong little being you are. My heart aches to see how much pain such a beautiful innocent baby boy has to endure. May your parents remain faithful, strong, and positive throughout your journey to recovery. You deserve the best and hopefully this transplant can give you a better quality of life. I enjoy seeing your charming smile in pictures. It really is contagious. Sending you lots of love from California.

    Like

  31. Rick says:

    After reading the update this morning, I shed some tears for the little guy. I’ll dry them up and send positivity your way. Never would I have imagined that a boy from halfway around the world could impact me so. Stay strong Seth.

    Like

  32. Lauren Coleman says:

    I was so excited to see him in his minion shirt! I hope he likes it along with his minion stuffed toy! I will continue to pray for Seth and your family to get through this. He is a very special little boy. Lots of love!

    Like

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