Today: A bit of head scratching…..

Hello again. Wow what a week. Its been amazing, confusing, stressful, tiring, scary, fun and inspirational!

Since my last today update (can be viewed here). Seth there have been a number of days where Seth has had a temperature which has resulted in increased respiratory rate, heart rate and blood pressure, but he has remained happy and positive in himself. As a result of this we have had a CT scan this week under general anaesthetic. The results of this show two areas of infection in the top of both lungs. Obviously this is a concern and it means that he needs the transplant soon if he remains without any form of protection as it seem the antibiotics he is on is managing it to an extent but they may not cope long term. They did manage to get a good sample of mucous from his chest whilst he was asleep so hopefully something grows from that and we are able to identify what exactly it is on his chest….fingers crossed!

I’d like to remind you of something I said in a previous post (here):

“They will give a drug called ATG everYday for 5 days starting Monday 9th March. This drug wipes out all the T cells. Then we wait. There is a possibility that Seth’s own neutrophils will come back, but they may not. He may be left with an empty bone marrow if the T cells have been able to cause enough damage. So them coming back and giving him a little bit of protection is best case.

Or the bone marrow may come back as donor cells…this will cause more head scratching and frowning from the consultants!! Let’s be honest Seth really likes to confuse things so let’s not rule it out even if it’s thought to be unlikely!!”

So, here i was talking about them giving Seth a drug called ATG. This drug kills active T cells. The aim was to get rid of the cells from the last transplant to allow his bone marrow to have a break and his body to return to normal function. The intention was that he would start to maintain red blood cells and platelets again and there was a small hope that his own neutrophils would return to provide some protection over the next few weeks while we wait for transplant.

So, over the past few days Seth’s bloods have shown a very small insignificant increase in his neutrophils (not enough to provide him with any sort of cover), BUT also an increase in his Lymphocytes (T and B cells) which means that the T cells they got rid of are now coming back……… this is where it gets complicated….

This could mean that his bone marrow is now producing T cells (donor ones as he will never be able to produce ones from his own DNA). These could be well-behaved T cells and provide him with protection and a working immune system (however, we are not seeing any significant increase in other immune cells at the moment).

OR his bone marrow could be producing T cells that are not well-behaved (like the ones that were killed off by the ATG). These would come back and cause Graft Versus Host Disease again. Seth has damage to his skin from Graft Versus Host Disease and he has damage and infection in his chest. So these  T cells may cause problems there, which we do not want.

So at the minute we don’t know whats going on!!!! They are taking blood to look into what cells are there in more detail to be able see more of what is going on, and this week he has his gallbladder removed and a few other bits done in surgery. Whilst he is recovering from this we will be monitoring what is going on with his immune system and skin and discussing the plan with the doctors.

This week Seth has moved rooms to his transplant room. He is in stricter red isolation so we are washing our hands more than ever which is making them red and sore, but that’s nothing in comparison with what Seth has been through so we’ll get on with it!

Also we have had the amazing #wearyellowforseth day. Which Seth loved. He was visited by local firemen who gave him a real fire suit and brought the fire engine outside his room. They then got lifted up to his window. (https://youtu.be/n9OSXjLLwHM). He loved every second. He has also receive gifts from various people, which has kept him busy.

But he has especially loved looking at everyone’s pictures! The dogs dressed in yellow has made him laugh out loud, he has been asking to look at more and had an amazing day Friday spending most of the day out of his bed and on his feet.

If you want to see ALL the pictures posted to ALL social media you can at http://www.wearyellowforseth.com.

Saturday morning he wanted it to be yellow day again – because that was his favourite day! So thank you everyone!  We really had an amazing day and the positivity shared on that day will help us keep Seth positive for a long time. YOU ALL DID GOOD!!!

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Seth received some balloons from someone and LOVED them!

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Seth and Me sporting our matching t shirts!

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63 thoughts on “Today: A bit of head scratching…..

  1. Roxy says:

    hello, I hope Seth is okay and getting better.. I wish him the best of luck..

    I didn’t know about this till it come across on facebook..

    I have been in tears as well as my family when we heard about this.. Seth we love you loads honey and hope you get well soon sunshine!!!💛💛💛💛💛

    And by the way.. I LOVE YELLOW TOO!!💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛

    xxxxxxxxxxxxx

    Like

    • Danielle says:

      What a strong handsome little fella! Brings tears to my eyes on how well Seth copes! Such a joy to know he still manages to smile! I would love to help in any way possible i would be happy to donate bone marrow if I would be a match! My son was diagnosed with SCIDS but was unfortunately to late he passed away a week later at 16 weeks old. Seth is such an inspiration even though I don’t know him I am so proud! Well done Seth keep fighting ! I pray for you and your family everyday!

      Like

  2. Leslie Bourque says:

    I just caught on and I am so sad I missed Seth’s yellow day. My 2 kids and I would have been cheering and wearing yellow for sure. We are following you now. I look forward to the updates. I have 2 healthy kids, 3 and 2 and I do not take one day for granted. I am inspired by you and your family and of course you beautiful baby boy. We are here- cheering you on and I am looking for positive updates to come…Leslie, Amélie and Hud

    Like

  3. Uzma & Aamna says:

    All of you define Family and my daughter and I will pray tonight for you. Thank you for making us a part of lil Seth’s progress. GOD BLESS YOU

    Like

  4. Aaron C. Hay says:

    I’m sorry to heat of the complications. I really hope things work out you see a healthier Seth who smiles all the time and can play and run about. I loved participating in wearyellowforseth day and so did all the people at the tattoo shop Black Cat Collective that i go to. If i could send him some thing i would to if i could get the info of how to and where and what he’s into😀

    Like

    • LJLane says:

      Hi Aaron thanks for messaging and taking part!! You can send something to Seth at: Seth Lane, Ward 3, Great North Childrens Hospital, Royal Victoria Infirmary, Newcastle Upon Tyne, England, NE1 4LP

      Like

  5. Delphi says:

    Dear Seth and Family,
    Thank you so much for keeping us posted as to your progress. Seth, you have touched all our hearts, and we’re praying for you to get well soon! There is something very special about you to be able to unite so many people across the globe. You have such a sweet personality and disposition – and you’re just adorable! Get well soon Seth! 🙂

    Like

  6. Jen Hoin says:

    I was wondering if Seth would benefit from being given a auto immune disease. Like Lupus or something that would give him a positive ANA on a blood test. This may sound weird but they are treating cancer with Polio…just a thought. I pray for him and hope the best for for him. he is super cute.

    Like

    • LJLane says:

      Hi Jen. I understand where you are coming from with this but Seth has no ability to create cells so giving him a disease would just cause the disease to make him unwell. But thank you for thinking of him and considering solutions!

      Like

  7. Tee says:

    I didn’t wear yellow on Friday because I got to know after I got to work that day! Seth, I want you to know that I’m earnestly praying to God for you and your family. Stay strong! A big hug from Texas😊

    Like

  8. Sonia says:

    Thank you for taking the time and keeping us posted on how ️Seth is doing!!! Thinking, Praying and rooting for you super hero. ❤️❤️❤️❤️❤️❤️❤️💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛

    Like

  9. Lynn says:

    You’re such a beautiful little boy, Seth. We’re sending you love and wishing you and your family every good thing…Lynn, USA

    Like

  10. Patricia Villegas says:

    Seth k Dios te cuide y la virgen te proteja … Deseo que te recuperes y puedas vivir muchos años mas … Te queremos mucho … Meriden – Connecticut – USA

    Like

  11. Hilde Aileen says:

    You are such a brave little boy Seth. So glad that you loved the #wearyellowforseth day, you look so happy! Stay strong, best wishes from Norway.

    Ps. Yellow is my favorite color to 🙂

    Like

  12. Care4Kids says:

    The connections we make will never cease to amaze and inspire me! I see hundreds of links on Facebook…and occasionally some will resonate with me for one reason or another. Upon finding a link to your Blog and reading your posts and the stories behind your beautiful son Seth…I am now beginning to think that the link found me! I live thousands of kilometres away from you…and yet your story has attached itself to my heart as if you were a member of my small community! Your strength as a person and a mother is completely admirable, and there is just something about the spirit in Seth’s eyes when he smiles that compels me to send prayers to him everyday (since reading his story)! I am so sorry that I didn’t send a picture for WearYellowForSeth day…but enjoyed ready how happy he was to receive all the support he did! I will continue to send thoughts and prayers to you and Seth…I wish I could do more!

    Liked by 1 person

  13. Dilys Dog (wearing yellow) says:

    What a confusing time for your little body Seth, your mummy & daddy are great- humans are lovely! My human is Leola and she lives fireman Sam too. I’m named after Norman Prices mummy (not many people know that)
    I loved dressing up in yellow for you, although I was a bit camera shy. I’m going to get my human mummy to look for another yellow hat- more photos to come!
    Woof woof & lots of licks Dilys Dog x x

    Like

  14. Kristy says:

    hi there Seth and family … I work in a schoolers childcare centre and we have been following your story … Your an inspiration to all that is touched by you – we are thinking of you little man and send you all our love from Western Australia 💛

    Like

  15. Josephine says:

    Seth, we all feeling so blessed coz we can see your smile! Don’t give up! U can make it coz u have got this yellow power from all of us who lives different places in the world. We all behind u Seth! I love u!

    Like

  16. Arjun says:

    SETH the HERO! Ur smiles make my day in the truest sense. Thank you very much Leanne for posting his pictures. I quote again “A small smile on Seth’s face, is a Giant Laughter on the faces of entire mankind”. Leanne you have done great service to all of us. The day when I come and salute, shake hands and then cuddle my Hero SETH is not very far. Thank you very very much SETH, thank you Leanne. GO YELLOW !

    Like

  17. winnie says:

    Hi, I’m an editor of SINA.com, which is a Chinese media corporation. We have collected hundreds of pictures of our readers wearing yellow for SETH. We really hope to contact you and send you those pictures. Greetings and Best wishes from CHINA!!!!!

    Like

  18. Margaret Brammaall says:

    what an amazing Mum you are Leanne and mummy to an amazing little boy . Hello Seth so pleased you loved your Yellow Day . We loved it too and enjoyed looking at all the pictures that everyone sent to you .We hope you get better soon and we are thinking about you always . Keep smiling Seth I look at your smiling face lots and lots of times a day you are a lovely lovely boy . Stay strong Leanne you are doing an amazing job love to you too .xxxx

    Like

  19. sonia says:

    Seth ,my HEART, i hope these are well-behaved T cells… i wish i could take your pain away. you cant even fathom the impact Seth has on my life now. thank you for keeping us posted on his progress. You Go my HERO, THINKING AND ROOTING FOR YOU ALWAYS AND FOREVER . love youuuuu soooooo much ,so so much!!!

    Like

  20. Raluca says:

    Dear Lane family,

    My name is Raluca Ceaunica and I’m writing on behalf of sPrint Textile Decorations. We wanted to be there for little Seth, so we also wore yellow. This is the link to our blog post where you can read our wishes for Seth. -> http://bit.ly/1BPzl8k

    We also sent a gift, so Seth will remember his friends from Romania. Because we did not have the home address, we redirected it to the hospital address. We think it will arrive at the secretary/reception area at the hospital. It should be there by tomorrow (Tuesday, the 31st) the latest. We also wrote on the package ‘to be delivered to Seth’s room’.

    All the love and all the best wishes

    Like

  21. Dawn Rice says:

    I hope and pray it is the well behaved T cells and all Seth’s defence systems start picking up soon. I’m glad you all enjoyed the pictures sent from around the world Seth is now almost as famous as Fireman Sam! Keep fighting Seth you are our little super hero!
    Love
    Dawn x

    Like

  22. Irene says:

    Baby Seth, I was teary-eyed when I saw your picture together with the smiley balloons. I really love your smile and it completed my day. I made your photo as my mobile and laptop home screen coz’ it’s my reminder to always smile and think life positively. You’re such an amazing God’s gift to us and everybody loves you. Just hold on Sweetie! Receive my continuous prayers for you till you’re fully healed, by God’s grace. i love you living Angel! :* GOD SPEED

    Like

  23. acmn1113 says:

    You might want to go back to social media, because there are new pictures today.
    I for one confused the days and posted mine today, and I know 11 more people wanted to show their support for him today. Maybe that will make him love every day of the week. While I’m here, I was wondering, do you have a number on the US that we can text to donate? I don’t have a lot of money and I still think it would be cool to repost a number for him to get fund from the US. Let me know.

    Like

  24. caroline nava says:

    Hello,
    I am writing you from Belgium where we follow the story of Seth with great attention and love since you post the video. He is such a special kid who, like Cupidon, send an arrow in the middle of everyone’s heart. Humanity needs beautifull soul like his. We are very lucky.
    We hope everything went well with the surgery today. Could you please tell him that the support he saw on internet was not only for the 27th but for everyday ?
    Whising you all the best!

    Nb: We have found three different wearyellowforseth’s Facebook pages.
    Is it you, the all three?

    Caroline

    Envoyé de mon iPad

    >

    Like

  25. Marvia says:

    Hey Seth ! I want you to know that my biggest wish is for you get better. I think about you and my nephew Andy every single day 😊 . I want you guys to meet and become good friends because you two are very alike! You both are superheroes. I believe in miracles and i know that like my Andy you are a miracle too! Keep strong my lovely hero. I know you can do it !!!!
    Love to mom and Dad and obviously the handsome Hugo !

    Like

  26. Michael Ullman says:

    So happy that Seth enjoyed all the pictures so many people, including myself, posted in honor of such a wonderful little boy. It brings a giant smile to my face, knowing that he enjoyed himself so much this weekend, and was out of bed and having some laughs on Saturday. A few comments up, Irene brings up Seth’s smile and how vibrant and inspiring it is to say the least, and my goodness could i not agree more. Seth you bring so much joy to sooo many people that I’m glad we were able to give back and send all of our photos everyone took for you! Im going to be posting a few more pictures in a few days that are a lot more creative with all yellow and groups of people.. and i know its not going to be on March 27th, but i hope Seth will still enjoy them. Anyways, i will be following like always and constantly sending my love support and prayers to your wonderful family. KEEP SMILING 🙂 🙂

    P.S.– So jealous of your guys shirts in the picture! They are extremely cool!

    Sincerely,
    Baltimore Mike

    Like

  27. megan says:

    Seth, you have touched my heart sometimes I lt feels like you have to walk around acting like your heartless but really seeing you brought back the good in people. Seeing how you have touched so many people all over the world. Even if it’s for oneday it’s was a huge day! You put all the trash that gossip off tv. I wish it was always a day like seth!!! Stay strong and stay true always!!!

    Like

  28. Miguel says:

    Hello from Spain. I send Seth all my best hopes and also to you , his family. I check everyday this web in order to know if there has been any change or update. I have really been touched by your story and I love Seth, he is older than my son but they both look like each other. If you find the time please tell us when you can how is he going and also how are you going too. A great hugfor you all, Miguel

    Like

  29. Marvia says:

    Hey Seth ! Its been weeks that i dont know anything about you 😞 i hope everything is going great ! 😽😽💛💛💛💛 love you little super hero !

    Like

  30. Lydia Cruz says:

    This little stud is so strong! My company, Jawbone, participated in #wearyellowforseth, and we had something we were hoping to send to you guys. Is there an address I could get?!

    Like

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