T+161

160 days since transplant day!!!! How has that happened?!!?! I am very sorry it has been so long since I have last provided an update. It wasn’t my intention to leave things so long, but being at home is just total brilliant chaos!!

After coming home everything was nice and settled for the first week. We went back to Newcastle for a check up and again they were happy with him. He was booked in to have his apheresis line taken out on the Friday of the following week. However, the line was not causing any problems and Seth was still requiring blood tests regularly. Also although his need for blood and platelet transfusions had reduced we were still not confident he would not start dropping again. So, the decision was made to postpone the operation to have the line out for a bit longer just to be sure….

However, on the Monday of the very next week his line was accessed for blood tests and shortly after Seth approached his dad with his t-shirt up saying “my line is leaking”. He was totally unfazed by the blood coming out of his line and going everywhere. Upon inspection the line had split near the top where it entered Seth’s body. We knew that this would be unrepairable so prepared ourselves for a trip to Newcastle to have it out.

First stop though is always the local hospital so that they can do initial checks and liaise with Seth’s consultant in Newcastle with regards to a plan. Also he was put on antibiotics immediately in case an infection had got into the line through the break. 24 hours later we were back on the road to Newcastle. The next day the line was taken out and luckily because Seth had not had a temperature he was able to return home the next afternoon. For the first time in a long time we had a fairly straight forward trip to a hospital, no unexpected long-term stays. BRILLIANT!!!

back in newcastle waiting for the op

school work !

the line- the blue clamp next to his skin is stopping the line from bleeding.

ready for the op!

All gone!!!

Being at home is fantastic for all of us. However, Seth is now more of an energetic, curious 5-year-old than he ever has been. He wants new challenges and new experiences like any young child, which can sometimes be difficult when he still has to remain isolated from other children and busy places. We have been pursuing home schooling via the school he is registered with and whilst waiting for that I have been trying to home school him so that he does not fall behind his peers. I think he will have enough to deal with socially when he finally goes to school so we like to try to reduce any other sources of stress for him.

Learning numbers playing Bingo

making bread

fine motor skills practice poking pipe cleaners through a sieve

learning about dinosaurs

collecting leaves , learning about autumn

  

making trees with a straw and water paints

Health wise he has been great. No illnesses or temperatures so far. So we are really pleased with that! Immunology wise we are still waiting for confirmation as to whether or not the Thymus is working. It is quite a source of stress for me at the moment. My understanding is that there is no definitive way to confirm whether or not anyone has a functioning Thymus, you just have to wait for ‘educated’ T cells to appear. This can be monitored via 3 things – which I cannot now remember the specifics. However, one is increased T cell numbers. This last week Seth’s T cell numbers have doubled – but this can happen also if he has in infection that he is fighting – then the uneducated T cells would multiply. Also there is a marker in the blood that is monitored in percentage – this has decreased significantly over the past few weeks which does indicate a working thymus, but again it is not conclusive at this time. The third way is by detecting the educated T cells in the blood. At present there is very little evidence to suggest educated T cells. So we continue to wait. Seth having GVHD for so long prior to this transplant may simply delay the Thymus sending out new educated T cells. Or there may be irreparable damage. Wait and See – rubbish!

He has managed to get rid of Rhinovirus which is promising. He is still positive for Adeno virus but is keeping it low level, so again that is positive. His skin is fantastic! Really clear. We have managed to be able to reduce the steroids right down again and we have not seen the GVHD rash in a few weeks!

IMG_9015

As a parent in this situation you have to manage your own emotions and stresses, trying to stay realistic and not to allow optimism to overcome you. With Seth being better in himself than he has ever been it is difficult to prevent myself from getting too comfortable, forgetting that this is not over yet. Also you find yourself trying to manage other people’s expectations as well. Everyone historically knows Seth as a child with physical struggles because of his health. They knew him as a child that did not run about, lacked confidence and tired easily. Now they see this normal (albeit small) 5-year-old energetic cheeky boy running around, so its difficult for us to highlight that we still do not know if he will be ok.

When we arrived in Newcastle in January this year, Hugo was only just 3 months old……he turns 1 in 3 days!!! What a year!



  

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50 thoughts on “T+161

  1. Meghan Mack Lindenfelser says:

    Seth I am so happy you are doing well! I will continue to pray for you that you improve more and more! You are a true hero!

    Like

  2. Shannon Crawford says:

    Hey Seth, I love your Cookie Monster shirt. You are so brave and strong. I know you will continue to improve. I have to say you are looking more handsome than ever. I’m praying for you!

    Like

  3. David Ainsley says:

    Thinking of you all ,if you are up this way on the 16/10/15 we are holding a charity night at Park View Gateshead in memory of Reece al funds raised going to THe Bubble Foundation. Well done Seth ( Keep on smiling and stay strong ) :)) David

    Like

  4. Georgia Boseley-Joyce says:

    I have followed you’re blog from day one and never commented! I am SO pleased for you guys, Seth and your family deserve all the happiness in the world! I hope Seth stays on the healthy track he’s following at the moment and huge happy birthday to Hugo! My boy turns 1 a few days after him! All the best, I look forward to the next update being even more positive! Xx

    Like

  5. Sandy Pityk says:

    What a beautiful, happy little boy! You’re doing such a good job caring for him and loving him! His progress reminds me so much of our little friend Gracie at that age; she’s now nearly 10 years old! I don’t get to see her often but was able to share pics of Seth and his story with her in July. We’re praying for all of you! Blessings, Sandy

    Like

  6. KimGoodrich says:

    I just want to tell you that it seems like when I need a little extra boost in my life ……here comes this little ray of sunshine named Seth with an update on face book. He does my heart so much good. Yellow ……that s the perfect color for him ♡ thankyou ♡

    Liked by 1 person

  7. Ivy First says:

    Alright Seth! You are such a ray of sunshine kiddo. Every time I see your smile, it brightens my day. Blessings for you and your family!!

    Like

  8. Jenn Carson says:

    I love reading all your update posts, and smiled ear to ear with this one!! I continue to send positve prayers to Seth and you all!!

    Like

  9. Nay says:

    Thanking God for Seth’s progress. You have 2 beautiful little boys who look like they adore each other. Will continue to pray for Seth until the doctors finally release him.
    Love & prayers from
    Nay/NC/US

    Like

  10. lesliesantos says:

    Hi Lane Family!! Thank you so incredibly much for the uplifting update on your journey! I can’t believe how big Hugo has gotten. They are both so adorable. Leanne how hard that must be to carry everyone else’s expectations as well as your own personal hopes. I’m praying for you, Nik, Seth, and Hugo continuously. I am delighted by all the pictures and how healthy Seth looks from March! His skin looks amazing! Love to you and your family always! Happy 1st birthday to Hugo! When do you haVe to go back to work? Last post your maternity leave was almost done. Blessing on homeschooling Sethy. I homeschooled my three children and it was a blessing to see them learn, grow and to truly know them.
    💛💛💛💛💛XOXOXOXO

    Like

  11. angelkhandra says:

    Love you, Seth! I am so happy to see you and your family so happy and that you finally get to enjoy being a child! Happy Birth-day to Hugo, as well! Thank you for being such an angel for all of us in the world who love you and are following your story. Your happy smiling face truly lights up my day!

    And Lane family – I so much admire your strength and love for your little boys! You are doing a beautiful job!

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

    Like

  12. Cindy says:

    That is such a lovely update !! Everything looks positive for Super Seth and you all as a family !! Hope little Hugo has a great 1st birthday with his Mummy Dadddy and Big Bro !!!!! Take care all of you and enjoy every day !! 🌞🌞🌞🌞🌞 xxxxx

    Like

  13. Tricia Brennan says:

    So lovely to see such happy positive photographs, the joy on all your faces is something to treasure. Well done all of you. ☺☺☺☺☺☺

    Like

  14. Jack Ricau says:

    This is such great news! Keep strong and keep going. Wishing you the best and thinking of Seth and you all. Ya’ll are truly an amazing family.

    Like

  15. Val says:

    I don’t know Seth but every time I read about him it brings a lump to my throat. Such a beautiful brave little boy. I had a scary minor procedure carried out in hospital a couple of weeks ago and I thought to myself why am I whittling about a pathetically minor procedure when your brave little man has been through so much. Seth is always in my prayers x

    Sent from my iPhone

    >

    Like

  16. JoZo says:

    I’m so happy to see Seth is going so well and having such lovely adventures! And Hugo is absolutely adorable too. I bet Seth is a great big brother to him. Wishing you all the very best x

    Like

  17. Sandy Kalpakoff says:

    Thank you so much for the update–understandably you are incredibly busy nonstop so we really appreciate the photos and health reports on “our Seth” because he truly is “ours”. We continue to keep all of you in daily prayers and are confident his progress will continue positively!!! Blessings on you all and extra special love and hugs to “our” Seth. He is looking so rambunctious we just can’t stop smiling!!!

    Like

  18. Katy says:

    What happiness to see that he can enjoy life like all children. I follow Seth’s story from your earlier publications, and it is a true lesson in life that you gave me. Thank you for sharing your story with us. Millions of kisses from France ❤

    Like

  19. Peter Craig Scott, Jr says:

    God Bless Seth and the WHOLE FAMILY! 🙏👼😇🙏👼😇. Being of Scottish dissent, I feel a connection to Seth that I cannot explain! I pray for him every night 🙏🙏. May your journey continue down the good path it is currently on, and may Seth GROW like a weed as his body begins to take over processes that the Drs have been doing artificially for him! All the best to you all! Seth truly is a little Angel 👼👼👼!
    ❤️ To you all, the Scott family (Peter Craig Scott, Jr.)

    Like

  20. Kathryn Rosia says:

    I am overjoyed from your latest post about Seth! I love this little guy! Seeing his happy smile, being at home with his parents and baby brother, Hugo, is so heartwarming. Seth is improving so much– even though you try not to get overly optimistic–any outsider can see it. We love Seth! Thank you for your update. Warm regards, Kathy Rosia (age 63) Post Falls, Idaho, U.S.A.​

    Like

  21. evam2424 says:

    Happy birthday to Hugo and I am so happy that Seth is doing well. Thank you for being so inspirational and I loved the video of Seth seeing his mom and learning he was going home soon. Thank you for making me so happy!!!! What address should
    I use to send Seth a gift?

    Like

    • LJLane says:

      Hi. Thank you so much for your message. Unfortunately, we are not able to accept gifts for Seth at the moment as we do not have a secure address for postage. Your thoughts and ongoing support gives us so much anyway!

      Like

  22. paula says:

    Just stop in to say hello to Seth and family
    Hope all is well. Wishing u all a very happy thanksgiving. 🙂 miss hearing how Seth is doing. He has touched mine and my family’s hearts. Love u Seth 💛💛💛💛

    Like

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