T+179

A shorter time since my last update. Seth’s health appears to be going from strength to strength and we are slowly getting used to our cheeky, energetic 5 year old that we have never before seen!

First haircut since he lost it all with chemo. It wasn't really all that long, just messy. So we had it tidied up!

First haircut since he lost it all with chemo. It wasn’t really all that long, just messy. So we had it tidied up!

Things are still going in the right direction, albeit slowly. A couple of weeks ago they took the bloods for the Thymus check and the numbers are still not enough to give a conclusive result. However, there does appear to be a few more ‘mature’ T cells. So were hoping that this is a sign that things are changing, slowly! Also he has grown FINALLY! 6 or 7cm since January.

He is now eating pretty well. He has three meals a day, small portions but he finishes them. We are currently encouraging him to try different things, especially things with a sauce. This is often met with some anxiety from Seth and he often takes a break from the table, but then returns and finishes the meal. The last few days he has come on leaps and bounds with this. The best way we can get him to eat – is by getting him to cook it with us. This week he has made us Lasagne and Pizza.

In himself he is ready to go to school and be with other children. He is under stimulated at home. We try our best but it’s the same home everyday. We get him out in the garden and to the local park when it is empty. But it’s not the same as being surrounded by your peers and stimulated 7 hours a day 5 days a week. Hopefully, his cells will come up soon and he can go back to school in January. He will be going to a new school and restarting reception year because he has missed so much.

Also, just as Seth was going into isolation, what seems like a long time ago. I posted that we did not have a family picture, and a member of staff took one of the 4 of us in a room at the hospital. It’s not the most flattering family picture. But it is all we had and at the time we were not sure we would get the opportunity to take another.

The only family photo we had.

The only family photo we had.

So, Hugo had a cake smash photo shoot booked for his first birthday. The photographer kindly let us use this session to get some family pictures. We love them!

(photo credit: rebecca jayne photography)

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At the moment he is having bloods taken every other week to monitor his full blood count, liver, kidney function, potassium, magnesium, white blood cells etc and so far things are pretty stable. He is currently on less medication that he has been on since he was 6 months old! Also once a week I give him an infusion into his legs (subcutaneously) of anti-bodies. Known as IVIG.

In other news…… Seth was the winner of the Northamptonshire Pride Award for Courage. Unfortunately, he was unable to attend the award ceremony himself due to isolation. However, his daddy got an evening out at the awards and collected it on his behalf.

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The Bubble Foundation, which has given so much to children like Seth has launched a campaign this week. Asking people to posts pictures of they #bubblesforthebubble. In our opinion the Bubble Foundation enabled Seth to have ECP treatment for the 12 months before his transplant, they provided Hugo and me with accommodation throughout Seth’s time in hospital so that we didn’t have to live 4 hours away. They do this for ALL families on the ward. They fund important research to help save the lives of children just like Seth. Here are Seth and Hugo with their #bubblesforthebubble.

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37 thoughts on “T+179

  1. angelkhandra says:

    Seth, you are my favorite little boy! I love you and your family and I am SO HAPPY you are doing so well! Congratulations on your award for courage! Your mum and dad are doing such a good job raising you and your sweet brother. You and your family just bring such sunshine to the world.

    Love Kari and Kimo the dog (Kimo means “Courage” in Japanese!) in Minnesota! Love you! 💛💛💛

    Like

  2. Jon says:

    Great to see the new pictures, Seth looks happy and so much like a little boy now with a flow about him. Glad all the family is well. Thanks for the updates

    Like

  3. Meg says:

    What beautiful photographs of a beautiful family, you all look so happy and wee Seth has a wonderful smile. I’m so happy that things are looking up for you all. It’s great to hear that Seth is eating better and helping to cook the meals, also helping to get wee Hugo bathed. He really is a star and truly deserves his awards he has received. You are a real inspiration to us all Seth and I just love to see how much better you are keeping now. God bless you and your precious family.

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  4. Seth's Friend! says:

    Seth!

    You are a superhero who is flying higher and higher each day, buddy! Also, food with sauce sounds yummy! You know lasagna was Garfield (the cat’s) favorite food. You should watch some Garfield shows – he is a silly, funny, lazy cat!

    Never stop smiling Seth!!! Sending you and your courageous family love from NY!!

    To Seth’s mom & dad — your unconditional love and courage leaves me without words… How blessed Seth is to be the son of such incredible SUPER parents!!

    XOXO

    Like

  5. southern3wheelingsa says:

    Just beautiful. I reckon your family photo is lovely. So good to hear that Seth is improving. Lots of hugs to you all. Bev xoxo

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  6. Lori DeFrias says:

    Seth , you and your family have inspired so many people with your strength and courage. I will continue to keep all of you in my prayers. I am so happy to see Seth having the opportunities to do things little boys should be…playing, learning and growing. The family pictures came out beautifully. God Bless you all!

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  7. Missy Washburn says:

    Love the update and the pictures! So proud for you all and sweet Seth’s progress 👍 Praying for that same continued progress going forward. Enjoy your family and the wonder of being at home 😊 Hugs from Memphis, Tennessee

    Like

  8. paula says:

    Seth looks so good. Love his smile. U can see the love in all of ur eyes.
    Give him my love. Ur boys look so much alike. U have cute kids. Hope u all have a good and safe holidays.

    Like

  9. Nay says:

    Such wonderful news and lovely photos. You can see the love for one another in your family’s eyes. Seth and your family have been through so much, and I continue to pray for Seth’s healing. Hopefully soon, Seth and Hugo will be able to interact with other children where they can share their love with everyone around them.
    Still in my thoughts and prayers in NC/US

    Like

  10. Linda Brown says:

    Was just saying my prayers last night for Seth and another little boy Adam, who I have met online! Hadn’t seen anything about Seth in awhile, and was praying that he was OK! I’m so glad to hear that he is growing and eating and being able to get out to the park a little! God must be hearing my prayers! Seth, you keep eating and getting stronger and you will get back to playing with all your friends! May God keep placing his blessings on you!

    Like

  11. Shauna Sprowl says:

    So happy for Seth, for all of you. What a wonderful gift you have in that little man. I’ve been a follower for a while now. Hugs to you all from Peace River, Alberta, Canada. 🚩🐯

    Like

  12. Sarah Johnson says:

    The family photos are great and to hear such positive news is fantastic! Keep going Seth – you are such a brave little boy and an inspiration!! You are all doing so well – hats off to all the family!! xxx

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  13. Margo hartley says:

    WIW!! The pictures are amazing and capture your family perfectly. I love the updates. Seth is one little super being that has touched my heart forever!!

    Like

  14. Margaret Brammall ab says:

    Absolutely fantastic news I am so pleased that Seth is getting so much better. The pictures of yourselves and your two beautiful boys are brilliant. I love every post you write Leanne and look forward to them. Thank you Seth for brightening my day . Keep looking after your lovely little
    Brother xxLove to you all xx

    Like

  15. Eva Zigon says:

    Dear Mrs Lane,

    Thank you ever so much for your post. I don’t know why news of Seth always makes me happy, but he really touched my heart the first time I saw him and I just knew I had to cheer for him with all the energy I could muster : ).

    Bless you and your lovely little boys. Your courage is an inspiration to us all. I pray (or send best and heartfelt wishes – whatever you prefer) for the best outcome for little Seth. You help us all be a little better and open our hearts just a little more.

    Thank you.

    Love,

    Eva & Family from Slovenia/Australia xoox

    Like

  16. Paula Hennessey says:

    As I sit here reading, tears are flowing down my face. These are tears of joy for your family. I am so happy to hear some great news for Seth and your family and just love seeing these pictures. I cannot express to you how happy I am, obviously you are above and beyond happy. I was just thinking of Seth the other day and had been waiting for a post and then you sent one. Still praying for your little man for his continued health and good news. Thanks for sharing him with us!

    Like

  17. Sue says:

    Absolutely uplifting! Beautiful photos. Wonderful smiles…I wish for them to continue on. You more than deserve it as your journey continues.

    Like

  18. Evelyn says:

    So glad to hear the good news! Congratulations on your award, Seth! It’s great you were able to get “proper” family photos–they are beautiful! Praying for your family from Iowa/USA.

    Like

  19. Leslie Santos says:

    Beautiful pictures! Love to hear any updates in your beautiful family. So happy for allof you that you got to have the blessing of all the family pictures. Stay well!! XOXOXO💛💛💛💛💛

    Like

  20. Amy says:

    YAY FOR SETH!!!! God is Good !!!! What a blessing to hear all the amazing things that’s happening for Seth!!! Love this update!!! And love your family photos!!! They are amazing!!!

    Like

  21. Anon says:

    I randomly found this page awhile searching for something else. I read this blog and it made me cry like a baby. Happy you and your family are doing so well!

    Like

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