+272….

Its been 38 days since my last update and during that time we have had a wonderful christmas and welcomed in 2016!

I hope you all enjoyed the festive season. I know some of my readers will have spent it in hospital nursing their own children through bone marrow transplants, but I hope that everything is going smoothly for you all. I remember spending Seth’s first christmas in Great Ormond Street. We were lucky enough that he had his transplant 8 weeks earlier so we were given permission to return home for the day. It was a 2 hour drive so it was a busy day but it was lovely to be home all together. A very quiet Christmas Day but it was everything we wanted at the time. As you can see from the photo’s at the time Seth was on a very high dose of steroid as he had already got GVHD.

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Christmas 2010 – Just after transplant

Last Christmas, i will be honest, I spoiled Seth. I couldn’t admit why, but I wasn’t convinced he would get another Christmas. Although a few weeks before I had asked Seth’s consultant if I was watching him die, and was assured I wasn’t; I still was not convinced. My dad had come over for Christmas as he lived abroad, it was a good happy Christmas, but there was a dull ache or worry inside me.

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Christmas 2014 – When things had started to go wrong

Then fast forward to Christmas 2015!! The best one yet! A child’s first Christmas is considered memorable, as should be every single one after…… we always thought we had great Christmas’ with Seth, but this one proves that the rest he did not have the energy to enjoy fully. Don’t get me wrong, I know that there are children in the world who’s Christmas and life do are far from as privileged as Seth. But as a parent you want to do what you can to make everything memorable. When he was feeling so rubbish, that ability was taken away from us.

December was a flurry of excitement for Seth. This is the first year he has really got excited about the build up, he talked about Santa and his Elves a lot and made up stories about what they would be doing. He loved counting down to ‘the big day’! On Christmas Eve I thought he might actually explode!!! He put a carrot and some food out for Rudolph and the rest of the reindeers, and a bottle of beer and mince pie for Santa. I was surprised at how easily he went to sleep and that he did not wake us up too early in the morning! When we went downstairs he entered the living room and whispered to himself “he’s been” with a big smile! It was amazing to see!

 

We then said goodbye to 2015. As we all do I reflected on the year, and I have to say…… what an amazing year! Starting the year with devastating news, we did not think Seth would see 2016, and yet I am sat her typing this with him asleep upstairs after he has spent the day at school! We never thought we could have got this far! Also 2015 was the year we saw amazing support for #wearyellowforseth from around the world. It helped us through some very hard times. We have recently seen another increase in interest as Seth’s video has been posted on Ellen Nation. You can vote by pressing on the green up arrow above the video (if you like) for it to be on the Ellen Show.

Seth is back in school full time now, mixing with the class like an ordinary healthy child. He loves it. He started the year just going a few hours a day, but then when he spent the whole day there for a dinosaur visitor he did really well and he has done full days since. He got a certificate in the assembly at the end of the first full week for trying hard at everything and for bringing his smile to school.

I have returned to work full time as well, so it’s strange not being home all day with the boys, but it is nice to get a bit of normality – although there are never enough hours in the day!!!! So apologies if I don’t get updates all that regularly.

Energy wise Seth is improving all the time. His hyper mobility is still there and he does still struggle to jump and run, but he is doing more and more each week.

His skin is still very good, we haven’t seen any signs of GVHD (touch wood).

His hair had started to fall out again and the white patches were once again growing. This was making me feel really anxious, this happened on the build up to his last transplant finally failing. However, it turns out his scalp has overgrown skin, almost like cradle cap (but not) which is common for people who have had a compromised immune system for a long period of time. At present we are trying to treat it with a special shampoo, it seems to be improving slowly. If it doesn’t work though we will have to try a sort of acid that we would need to put on his head for an hour a day.

Immunology wise things are great! We had a visit to Newcastle today to see Andy and he is very pleased with him, he says that its now time to concentrate more on the secondary concerns like his growth and weight. Seth has been growing in the last 6 months, but his weight has been pretty static, he is currently 12.8kg, only 2kg heavier that he was a year ago and three months ago he was 13.6kg. He is still on an overnight milk feed of 500ml (a high calorie milk feed) and his relationship with food has improved significantly. He is now eating 3 meals a day, however, he won’t eat anything with sauce so getting high calorie food into him is a NIGHTMARE! His favourite foods are Carrots, ham sandwich (no butter), Popadoms, Popcorn, sliced ham and cous cous…..its really difficult to get anything else in him. So we keep persevering and encouraging to try new things.

I no longer take it day by day, i am still on edge if something happens, but now its more about giving Seth the opportunity to live, rather than fighting for his life.

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40 thoughts on “+272….

  1. Ivy First says:

    As always, I get tears in my eyes when I read your updates. Thank you for sharing Seth with us. He is a treasure. I am so happy that he is now focusing on LIVING LIFE! The world is a better place because Seth is here. His smile melts my heart every time.

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  2. Sandra Gillett says:

    I work at the school Seth goes to . He is a little chatterbox and has even given me a nickname …ask him if he scared silly Sandra today with his monster shoes . A charming and funny little boy x

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  3. Linda Valenzano says:

    Thank you for the update…I remember showing my family a picture of Seth putting out the goodies for Santa, his picture brought us all a smile. It is what he worked so hard for, a happy, healthy life. May our dear Lord continue to watch over this beautiful boy, and I pray that he continues to flourish. We love you Seth, you taught us all what real courage looks like! Your friends in Lemont, Il.

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  4. Kathy Arigan says:

    Thank you for sharing your story and journey with Seth. He is an amazing, beautiful boy and I am so thrilled to see his improvement. May your lives be blessed at every turn, and wishing only the best possible outcomes! Prayers and positive thoughts being sent here from Canada!

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  5. Kathy Arigan says:

    Thank you for sharing your story and journey with Seth. He is a precious, beautiful and amazing boy. May blessings be abound and great outcomes your way! Sending positive thoughts and prayers to you and your family from Canada!

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  6. Michael Hild says:

    I always look forward to reading these updates! I’m so glad to see that Seth has improved so much! I wish you all the best and I wish you all many, many, many more new years with little Seth!

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  7. Amy and Aliyah says:

    Hey Seth!!!!! Awesome news to hear you are enjoying life now!!! Your mom and dad really love you and they are thrilled to seeing you smile and take life and experience everything!!!! We first learned about you when it was yellow for Seth and reading this just makes my heart warm in smiling because you’ve really been through a lot and you are a true survivor and a soldier!!!

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  8. Annie L says:

    Reading Seth’s positive update had put a smile on my face. I am really happy to see that he is doing well and got to spend the holiday home with his family.

    Be strong, Seth!!

    AL

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  9. bottomtothetop says:

    Happy New Year to you all!! Wow what a great read. Fantastic and so encouraging to see his progress. So great that you can be together at home on a special occasion. Long may it continue.

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  10. margaret says:

    Wonderful to read that your lives are a little more ‘normal’, and that it has been a while since your last post. That’s good, it means you are getting on with your lives. I’m sure you will sort out the nutrition issues over time, you have all done so well on this long but rewarding journey. This young fellow holds a special place in our hearts…. as does all his family. Happy New Year to you all. xx

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  11. Amy says:

    Thank you for sharing your experience. Our son Sam is going into the bubble tomorrow to start the pre transplant chemo. Sam’s condition is different to Seth as he has acute myloid leukaemia. We’re so pleased that Seth is doing so well and hope that our family can be as brave as yours.

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  12. Missy Washburn says:

    Wonderful news to begin your new year! And thank you thank you for taking time to share the update and pictures! Your boys are precious and Seth truly is an amazing child! Yay family 👍! Hugs and prayers to you all from Memphis, Tennessee

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  13. JessicaF says:

    So happy to read how Seth is doing much better. His beautiful smile always warms my heart. I hope that the rest of 2016 brings good health, joy and laughter for you and your brave family.

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  14. Nay says:

    I’m thrilled to hear of Seth’s improvements and achievements, God is good and I continue to pray for him every day. May God continue to bless you and your family.

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  15. Alan says:

    Really glad to hear that you had a wonderful Xmas.. A big hug to my friend Seth, it’s always nice to read some good news.. stay strong man!!! God bless you all. Alan from Italy.

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  16. Kathryn Rosia says:

    Seth, you are so loved! I am excited by every post that your Mum makes. She gives us pictures of you and your smile just lights me up! You are in my heart and prayers. I am so thankful that you are living life to the fullest and enjoying school. You are “Our Little Hero”.

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  17. mishjensen66 says:

    Thank you so much for a wonderful update. I have been following for close to 6 months now. Each post has gotten more and more positive, and Seth has gotten healthier. My 10 year old son Broc says “Maybe we are good luck for him, Mom”. So sweet. I have two sons, Talon is 12, and I am grateful everday that they are healthy. My heart goes out to you! But in all honesty, you inspire me to be a better Mom. I thank you for showing me how fragile life can be as I took everyday for granted. You are a blessing to my family. Sincerely your #1 Fans in Utah.

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  18. Jenny Childs says:

    Thank you for the updates Leanne. So pleased that Seth is continuing to do well. What a joy that you have a more normal life again, you have been through things that most of us will never know and I applaud your strength. Best wishes to your lovely little family.

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  19. Caity says:

    Hello from NYC! I’ve been following your blog for a while, not for any particular reason, and am so glad to read that he is doing much better. What a sweet, charming son you have. I’ll continue sending positive thoughts your way that he keeps improving.

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  20. Byke says:

    Dear Seth, your are not the only one. Right now I m sitting next to my son of 14 years old. Also scid and a boon m transplantation ( when he was 8 months old). In time your mom will be loving you even more because she’s sure you will not leave her…
    I wish you all a happy healtly family life
    Kind regards Byke from the Netherlands

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  21. Lesley-anne says:

    Oh love love love these photos!!! He looks like he’s been having an absolute ball!!!! What Christmas is all about!!!! 💛💛💛

    Like

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