Today: T+13 – unlucky for some?!?!

WELL NOT FOR US!!!!!!!!

Thanks to vivabop uk for this. we LOVE it! So true for ALL the superheros going through; have been through; or will go through BMT

I totally am putting today and yesterday down as AWESOME days. Seth has a LONG and uncertain road ahead of him. By no means is he out of the woods…..

HOWEVER, look at these numbers:

so the initial numbers we look at are the Neutrophils- 0.5 or above consistently means he can go outside (as long as he is well)

Yeah – that’s right – WE HAVE AN IMMUNE SYSTEM – and because the neutrophils are coming up it is most likely to be daddy’s magic and not the old mean and grumpy immune system from the last transplant.

These numbers are still too low for Seth to leave his bubble. But as you can see – they’re getting bigger. Slow is good as if the cells rush in they are more likely to rush about causing inflammation/Graft Versus Host Disease (bull in china shop springs to mind).

Not only do we have some cells but my boy is BACK! He is cheeky, a little obnoxious at times, sharp as you like and determined to be a normal little boy. Yesterday he was walking to and from the toilet and both days we have been playing games and doing rescues with Fireman Sam and Paw Patrol. The last two days Seth’s strength has knocked me sideways.

He still has incredibly painful hands and ulcers in his mouth, he is weak from spending so long in bed. But he is fed up of being in it. So much so that today and yesterday he didn’t want to get back in and fell asleep on his playmat on the floor (don’t worry the playmate is sterile!!!). I also got to have my first proper cuddle in 3 weeks. He is still in RED isolation so no facial touching, but a cuddle is enough. Seth gives THE BEST cuddles.

rocking the ‘new do’ – he loves it ๐Ÿ™ˆ

so fed up of being ill- nap time on the floor ๐Ÿ˜

So what now? All sunshine and roses ahead? Unfortunately, no one can say. He has got through the chemo and engraftment, so far, is going well. But the next 5 or 6 weeks will be telling as to whether or not the engraftment is going to cause problems. Our main worry is the return of Graft Versus Host Disease.ย Having battled GVHD for nearly 4 years I kind of consider it to be part of transplant. The fact that is may not happen has not registered with me. But i am scared of it returning. The treatments for GVHD take there toll on Seth, as well as the GVHD.

So the next weeks consist of watching and waiting day by day. Watching Seth looking for any sign of GVHD which could be problems breathing (GVHD of the lungs), acute diarrhea (GVHD in the stomach) and his skin flashing red initially (skin GVHD).

The risk of infection remains, Seth has a new immune system that is not at the same level as a fully functioning immune system. But at least he has a bit now which will help him and the doctors have a better chance of managing infection.

The next positive stage – being dropped from RED isolation to PURPLE and being allowed to go out for an hour or so each day – a big step for us. A big scary step. Mixed emotions at the moment as I am scared to hope because I don’t want to get complacent and then be totally floored by hiccups or problems. However, 4 months ago I was telling myself I would probably end this year as a mother of 1. Now, I might, just might, end it as a mother of 2.

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101 thoughts on “Today: T+13 – unlucky for some?!?!

  1. Sandy Kalpakoff says:

    Awesome post! Loving Seth’s smile-he’s such a trooper! Thank you God for hearing our prayers for Seth and his family. I can only imagine how precious the snuggle cuddle with Seth was!!! Sending love and hugs.

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  2. Aop says:

    Oh, praise God! We have been praying for Seth since learning of him about two months ago. We keep our yellow sign from our picture up on the fridge and pray for him always. Love from South Carolina, USA!

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  3. Lynn says:

    I’m overjoyed about Seth improvement! (AND bawling my eyes out while reading such good news! Lol!) So happy for you all.

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  4. lesliesantos says:

    HALLAJUEHA!!! Thank you Jesus! Seth you’re amazing!!! Keep fighting litle buddy! We are just overcome with abounding sweet joy for you and your healing! We check for updates several times a day. We’re so happy you got to get outta bed and play with your Paw Patrol!! A lovely wonderful smile with a rockin do!
    Leanne, again you and Nik are awe inspiring and I have great compassion for you.
    Love to you all
    XOXOXOX ๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›

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  5. Jyotsna Wase says:

    That’s our Seth! The boy who sings ‘fireman sam’ while eating and strikes a pose when he sees the camera (haha), plays guitar and rides his bike. That’s Seth. This is a brilliant BRILLIANT update. Thank you, Leanne. Thrilled to know you could cuddle him today. Absolutely wonderful! I woke up this morning with a message from my boyfriend ‘Amazing update’. And it’s clearly more than just amazing!!! Very very happy!! Thanks, Leanne. Always great to see Seth’s pictures. ๐Ÿ™‚ ๐Ÿ™‚

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  6. DSF415 says:

    It seems that I am not alone in celebrating today’s post with tears of joy and cheers of jubilation. I check for updates everyday and I was overjoyed to read of Seth’s progress. I am so, so, so happy for you guys. I understand there is still many hurdles, but today was good, which is all you can ask for when your’e taking it day by day. Thank you for being so strong Seth, Leanne, and Nik. I wish i could give you guys a big group hug. Your bravery is genuinely inspiring. Amazingly, my Athletes brand shirt with Seth’s design was in the mailbox today, making today’s news borderline unbelievable. I couldn’t believe my eyes. Then couldn’t stop crying hahaha ๐Ÿ™‚ LOVE from San Francisco

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  7. Donna Benoit says:

    Love you Sethโค๏ธโค๏ธโค๏ธโค๏ธ
    You are such a strong little boy with wonderful parents. I believe In Believing.
    I am sending you every ounce of my positive energy to see you get well. Others call it praying, no matter what it is called it helps. As a collective, all who love Seth send your positive healing thoughts to him. He will receive it. XO to Seth and family

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  8. Connie Mallory says:

    I am SO excited to hear this news!! Prayers are continuing to go up for all of you!!! ๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›

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  9. Lorraine says:

    I am in the ward next Thursday for a year’s check up with my son so if you want anything just tell me and good luck x x

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  10. Liz Aquilla says:

    You are my SUPER HERO, Seth! You remind me of why I wanted to have my own little super-heros, and why I, too, must fight like a brave everyday.
    HOKA HEY, Warrior Fireman Super Seth-!!!
    (Hoka Hey=Lakota Souix Warrior Cry for “Go Forward, Be Brave, Be Strong”)
    Lots of hugs and kisses from “Ice Muffin” on Lake Winnipesaukee, New Hampshire, US, where we love to fish out on the ice! โ„๏ธ๐ŸŽฃ.
    I would love to share pictures if you would like๐Ÿ’•๐Ÿ’•๐Ÿ’•

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  11. yara sulaiman says:

    God bless!!! I really do hope he gets well soon! All our prayers are with Seth! Such a hero ๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›

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  12. Amy Neal says:

    This is amazing news!! About time you received some positives. Very chuffed for you all and lovely to see Seth’s gorgeous little smile!! xxx

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  13. Meghan says:

    I’m so happy that your family and your wonderful wee boy have some good news! I’ve been following your posts for a while now, and sported my best yellow for Seth, so it’s nice to see that he’s getting back to his old self again. He’s a fighter, a tough one at that, and my fingers are crossed that this good news continues!

    Like

  14. bettymacfarlan says:

    I have just read about Seth x what a little warrior he is x I am sending love and cuddles(this kind wont harm him ) these cuddles are for the whole family x x you are in my prayers x god bless you all x x stay strong x x x x

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  15. Rutuja bari says:

    As I always tell you Seth makes my day..seeing that number going up and the magic happening makes me just feel so happy for the little brave man..let the magic keep happening ..little hero loads of love๐Ÿ’›

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  16. simon bromiley says:

    Sounds like very encouraging news. It looks like all the hard work and research by many scientists, doctors and nurses may finally pay off.

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  17. Kathleen Wyatt says:

    Hello to you all.Sending happy thoughts and love you guys are doing a great job.Love the photo of Sethsnew hair do he is so adorable his smile is Gold.๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐Ÿ’›๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐ŸŒผ๐Ÿฑ๐Ÿฅ๐Ÿฏโ˜€๏ธ๐ŸŒฝ๐Ÿ‹๐Ÿฏ๐Ÿš•๐Ÿšœ๐Ÿš–๐Ÿšค๐Ÿ’›

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  18. Kathy Rosia says:

    This is such positive news about Seth. So many prayers are being said for him. I love your little boy. Seth is amazing and so are his parents!

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  19. Sandi Warner Burk says:

    This precious Angel has suffered so much and all of us wish so much we could do something to make his pain go away and all of this be a bad dream! Those pictures made me think, “My God forgive us when we’re petty” as I cannot even imagine how sick and tired he is of being sick and tired. God bless his parents as Seth knows how Special he is and how much he is loved. I pray for Seth and his family every day during this very delicate time.

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  20. Allie Sanchez says:

    Such amazing and wonderful news ! I am so so so happy for Seth and family, I can’t imagine the journey you guys have gone through to reach this point. Always praying and hoping for this little angel that stole my heart. Hope the road ahead is easier for you guys!

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  21. Roxana says:

    Yes! This made me cry, but this time were happy tears. This strong little man has touched my life in a way I can’t explain. Keep us posted please, we love Seth! Much love from Peru โค

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  22. simon bromiley says:

    Very welcome news Seth. The scientists, doctors and nurses have done a marvellous job. And especially mum and dad. I will of course not be sending any prayers or thanking any jesus’s or gods but I will continue my subscription to cancer research. You are proof it is worthwhile.

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  23. Camille says:

    Go Seth!!!! Keeping him and your family in my thoughts daily and sending so many positive vibes. You’re all superheroes! So strong and resilient

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  24. Sandi Warner Burk says:

    Every time we hear good news about Seth the Sun gets brighter!!! He is surrounded by loving thoughts from his new Fan Club and I’m proud to be one of your Fans Seth! You’re a #1 Hero!

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  25. Sandi Warner Burk says:

    Happy Sunday Seth to you! We are so very happy to hear the great news and we’re taking one step at a time with you!! You are such an amazing Hero and we all love you dearly.

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  26. Michael says:

    Im so happy he is doing better. Keep up the good work big man. by the way I love the minion shirt, me and my family are praying for y’all. Love from Alabama

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