2 years since the day that change ALL of our lives

 

It has been a long time since i have posted. Apologies for that, life has got in the way.

I can not believe that 2 years ago today Seth made it to transplant and he got ‘the magic’ from his daddy. The difference in him in those 2 years is unbelievable! I don’t think Nik or I ever thought we would be raising a ‘normal’ boisterous cheeky child – who hasn’t been hospitalised with illness in OVER A YEAR!!!!!! – that would never ever happen! We spent 5 years in hospitals, just thinking this was how parenting was. Knowing nursing staff on sight, where as now I doubt the nurses in our local hospital would recognise us!

So Seth – medically is doing really well. In terms of his immunology he is fine! Great in fact! He has now had all of his immunisations (he had to start all over again as if he is a new born) and has managed them fine. We are also now on ANNUAL visits to the Great North Children’s Hospital!!!!!!!! – in 6 years we never thought this would ever be possible!

He had period where he suffered with a sickness bug. For two or three days he was ill, but recovered well. Although, he stopped eating and it took us a few days to get him back to eating anything. This worried me and I was anxious that we should be ringing the hospital. However, he came out of it and is now back to eating EVERYTHING in sight – which is another first for us as he has always been fussy with his food. I think his taste buds are finally recovering from the years of steroids and the chemo. He is trying new foods and enjoying them, he is looking forward to certain types of food for the first time ever! So for those of you coming out of chemo and going through that phase of being desperate for your child to eat and not understanding why they won’t eat the slightest thing – don’t worry – eventually they will! People told us this, but at the time it seemed like there would be no end. That Seth would always only eat ham and pretzels! But now he loves Chicken Curry, Fajitas, a roast dinner, lasagne – all sorts of sauce based food! Only recently has he been able to eat sweet food. Seth has never been partial to chocolate or anything sweet, however, in the past few weeks he has started to ask for sweet treats! This is something we are trying to manage well as we don’t want his teeth rotting away – especially when the dentist has been so pleased with the quality of his teeth because he had not had sugar!

Seth is growing as well. He is still small for his age, more like a 3-4 year old. However, he is finally growing! I have had to buy new shoes and clothes for him because he has grown out of things- I have never had to do this before! (well only previously because the steroids made his belly so large that I had to buy a bigger size in tops!). His legs have also grown and he is much more in proportion. He is still on a night feed of milk to help with his calorie intake (and hopefully growth).

Physically Seth is improving all the time. A few weeks ago he walked to school for the first time. It was his request and we didn’t think he would make it the whole way. But he did, and he really enjoyed it! He does have a bowing to his legs where his bones that go into his knee joints have grown at different speeds – so the outside has grown faster than the inside causing his lower leg to come out at an angle rather than being straight. We have been to a specialist about that and they have noted some improvement so are not going to interfere at present. I can also see an improvement as he is running and able to do small jumps now, where as previously he couldn’t do that at all.

All in all his quality of life is infinitely better than what it was 2 years ago and we have The Great North Children’s Hospital, the nursing staff and doctors on Ward 5 and of course Andy Gennery and the other immunology consultants who worked so hard to get him through transplant.

Although things are going better than expected, you still get your worries, the niggles that you have developed over time worrying about a child with health problems. However, they aren’t as strong and less frequent. Life becomes fun again and planning for the future doesn’t require the careful planning and commitment that it once did. Seth has ongoing battles to face in relation to finding his place socially and catching up educationally. He missed so much as a child that he is not as developed or sophisticated as his peers and it is hard as a parent to watch your child try and figure his way through this maze. He wants to socialise with peers his age, but he is smaller and not as mature, but then children younger than him he struggles to understand and accept their unpredictability. Educationally he struggles sometimes but he is catching up so hopefully he will get there. We will do what we can do to support him, but unfortunately these things we can’t do for him.

I am afraid this is likely to be my last post on here. With work, family life and another baby on the way I am struggling with time!!! Thank you to every single one of you for the support you have shown Seth over the past 2 and a bit years. You can never know how much it helped us help him.

Thanks

Leanne, Nik, Seth and Hugo.

This is how Seth has been spending some of his time since transplant!

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Guitar playing

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Making the most of a hot and sunny day in England at the beach!

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Giving his brother a lift!

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First Ski lesson!

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Has there ever been anyone more excited to meet Santa?!?!

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74 thoughts on “2 years since the day that change ALL of our lives

  1. Krissy says:

    I always think of Seth when I wear yellow and wonder how he’s doing, so I love this update! Congrats on the new peanut coming into your world!

    Like

  2. Mitchy Leinen says:

    First off, Thank you once again from the bottom of my heart for sharing Seth with the world. He will always and forever have a special place in my heart and it is hard to explain how one can love a little person so dearly that they have never met. I will say prayers forever that God watch over your entire family and that Seth continues to grow an develop like any other healthy human being. Congratulations on your soon to be newest edition. I hope the boys are excited!!! Tell my little hero that the color yellow forever more, will be my favorite color EVER!!! Hugs and Love from South Dakota, USA. Mitchy Leinen

    Like

  3. Jaricau@gmail.com says:

    So glad that he is doing well! Congratulations on your soon to be addition to your family. My wife and I wish you all the best.

    Jack & Alison Ricau Baton Rouge, Louisiana

    Sent from my iPad

    >

    Like

  4. Archangel says:

    Greetings from Santa Fe, New Mexico, USA.

    This is awesome!  We have been praying.  We are so glad to hear the news. Thank you for the update.  

    Seth

    From: ourlittlehero To: paleopetra@yahoo.com Sent: Monday, May 1, 2017 8:30 AM Subject: [New post] 2 years since the day that change ALL of our lives #yiv4868059701 a:hover {color:red;}#yiv4868059701 a {text-decoration:none;color:#0088cc;}#yiv4868059701 a.yiv4868059701primaryactionlink:link, #yiv4868059701 a.yiv4868059701primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv4868059701 a.yiv4868059701primaryactionlink:hover, #yiv4868059701 a.yiv4868059701primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv4868059701 WordPress.com | LJLane posted: ” It has been a long time since i have posted. Apologies for that, life has got in the way.I can not believe that 2 years ago today Seth made it to transplant and he got ‘the magic’ from his daddy. The difference in him in those 2 years is unbelie” | |

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  5. Tricia Brennan says:

    I am so delighted for you all that Seth is a boisterous typical boy. Knowing there was so much support out there for you all must have been a great comfort but the joy of a healthy child cannot compare I am sure. He will always be in my thoughts so please keep up the occasional blog, they are delightful. Love and hugs to you all from the South Coast. Tricia xxx

    Like

  6. Missy Washburn says:

    How incredible!!!! So very happy to read your post and see life progressing for you all! Thank you for sharing your family with us . We are all the better for knowing your remarkable Seth and amazing family! Blessing to you all 😊

    Like

  7. Annie ly says:

    Thank you for the update. It’s been a while since the last update. I think about Seth periodically. I am happy to see that he is doing well and improving each day. He’s grown a lot since the last update. I hope he continues to get strong and healthy.

    Congrats in advance on your new baby.

    Take care,
    AL

    Like

  8. Sandy Pityk says:

    It is so good to hear from you! What a beautiful family, and Seth is simply wonderful! I’m very thankful for all that God has done to bring healing to Seth, and have continued to pray for you all. Congratulations on your new baby to come! Our little friend who has been through all of this, too, is now 11 years old and doing quite well!
    Blessings,
    Sandy

    Like

  9. Cynthia says:

    Sad that this may be your last post but so happy for the news about seth! He has gotten so much bigger. Good luck on the new baby! Maybe you can check in about seth around birthday times.

    Like

  10. Ramona Fields says:

    Dear Mamma,

    I’m so glad to hear and see Seth doing so well!! My prayers for you all will continue that it stays that way!! Sorry to hear you’ll no longer be posting but thoroughly understand why. You all need to be a family and let what’s happened become a part of the past as much as you can! Happy living!!! =]

    Like

  11. Amy & Aliyah says:

    Two years ago we saw your post and we fell in love with that little boy and we wore yellow for Seth … we watched your struggles and your successes at the hospital with him read all of your posts and we prayed for him all the time… see God is good and seeing these pictures of him he looks like a normal little boy and I am so happy for you and the family and that everything is going well and that he’s not living in the hospital like he was before that is absolutely amazing … we will continue to pray for him and your family and if we never see a post from you again that’s a blessing because that means that everything is all right and congratulations on the new baby on the way and best wishes to everyone in your family

    Like

  12. Christina Davis says:

    I am over the moon happy for him..It brings joy to my heart knowing he is now living a normal life and seeing how far he has come and all the obstacles he has overcome at such a young age..He is a true hero.and a super fighter. I will me seeing updates on him but we all understand after everything you guys have been through, you want to get back to as normal of life as possible…We love you Seth and I pray for you every day!! Love and hugs!💛💛💛😊

    Like

  13. Dian Howell says:

    I was so overjoyed just now to see your updated post on Seth !! Wonderful news to hear. Seth is a trooper for all he has gone through and has a super family to always be there for him. You stated this would be your last post about Seth, I am saddened to hear that, but I do Hope you will re-consider and give us an Update once every year, we do care so much. The best of luck to Seth and all the family and to the new baby on it’s way. Please, Please keep in touch each year !!!

    Like

  14. Aslinn Pityk says:

    Ah, thank you! We have prayed for that little one through the years! What beautiful, happy children… and congrats on the new baby! May God continue to richly bless you through Christ Jesus our Lord. And thank you for writing. It encouraged us in our own story. Love, Aslinn (South Carolina)

    Like

  15. Beatrice Regehr says:

    Just this weekend I’d been thinking about Seth and wondering how he’s been doing. Thanks for the update! So happy for him and all of you! Praying he continues to do well and thrives! I’ve mentioned before that my brother is a survivor of the same illness and I’m happy to tell you that he is now 40 and healthier than the rest of the family and living a happy and productive life! Wished you all the best as you navigate thru Seth’s continuing progress!

    Like

  16. Nay says:

    Seth , you aren’t just a little hero, you’re a miracle! May God continue to bless and protect you and your family. Congrats on becoming a big brother agin!
    Love and prayers from NC USA

    Like

  17. Jon Miklich says:

    Wow!!! What a great day to receive this update on Seth. I’m so glad to hear and see what’s going on.. Seth looks great. Thank you ,Thanks for the new update.. wishing your family the best.

    Like

  18. trystmua says:

    Amazing, I have auto immune disease and am so thrilled about this amazing update! It is music to my eyes and heart! I am filled with joy and Seth looks amazing. Years ago when Seth asked for pictures I crafted an original design. Just for him and I still only use it just for him; and your family.

    Wish nothing but amazing progress, hope, and joy. As I live with multiple auto immune complications in Now SC (Then Washington DC are) of the USA. I am 36 years old, and married. Happy, most days. I am sure your amazing son will be amazing!!

    Wishing light, love, healing, and much happiness for all you do!
    Tryst “Beth” LaRand
    TrystMUA

    Like

  19. Amanda Sharma says:

    I am so happy for you all,seth looks wonderful Leanne and congratulations on baby number three ( I had my 3rd last year and three really is the magic number) seth and hugo look so alike in the pic of them together. I wish you all so much love and Health and happiness together. When I look back at our time at high school it seems not long ago…how did we become grown ups with kids of our own!! My lg is still on immunosuppressive therapy for her illness but is managing well she is still a little behind in schoolbut we have a tutor who comes to our home and offers extra support. She is now up to scratch with her reading.it will just click with him I promise. He will catch up. Lots of love to you all and to little seth. Take Amanda Sharma (nee Clitheroe) xxxx

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  20. Gaye Henry says:

    I really only became a Seth groupie when we wore yellow and gave daffodils to all our Much Loved customers on ‘wear yellow for Seth’ day!
    Since then I have followed Sets story closely and am thrilled he is doing so well.
    Your blog will always be an inspiration to others.

    Liked by 1 person

  21. Michele L Martin says:

    Omg he looks awesome so happy to see him now continued prayers can’t wait to see what you future holds

    Like

  22. Aslinn Pityk says:

    Hello! Without taking the time to divulge our story, I would say just one more thing, since this is your last update. As you navigate the waters of social development, be your child’s advocate and trust that you know him best. So many opinions will be thrown at you about how to increase his physical development, his social development, this and that diagnosis and medicine to help. It will help to simply accept where he is, allow him to be a little ‘behind’ if that’s what they call it, cultivate and nurture his development exactly where it is, not trying to push and push and match his development to those his age or a year younger. You will be encouraged to push and to use medicines to do it. Don’t allow others to put that kind of stress into your and his lives. Live in peace and protect that happy, peaceful, grateful spirit that shines through you even in your written updates. God bless you, I won’t stop praying! ~Aslinn (in South Carolina)

    *–* *You have made known to me the path of life;* *You will fill me with joy in Your presence, * *With eternal pleasures at Your right hand.* Psalm 16:11

    Like

  23. Margo Hartley says:

    Congratulations on so many levels from Canada ! Congratulations on a new baby, on all the milestones you have all achieved as a family during these challenging times and most of all Thank you for sharing your life with all of us. The difference that your family and Seth have made throughout the world is to wake us all up to what matters and to take life one day at a time. YELLOW will always be the colour that I associate with that incredible little boy. All the best in the future 😍Margo from Canada

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  24. Katia says:

    Thank you for sharing your life with us, thank you for teaching us how life is important, thank you for explaining us how little thinks are so big when not in health. Un forte abbraccio di cuore da Katia, Milano, Italia.

    Liked by 1 person

  25. Karin says:

    So glad for Seth !!! Wishing you and your family all the best !!! Following the “Wearyellowforseth” was a great lesson for live !!! I’ll be missing your messages, but on the other side it means that all go’s for the best for Seth !!! Big kisses from France !!!

    Like

  26. Melanie says:

    So thrilled to know he’s doing well. He looks so happy. Keep it up! Congrats on your expanding family! Much love from Plymouth, Massachusetts, USA! 💛💛💛💛 thanks for letting us all know how Seth was doing and how you and your family was coping. Really glad to know there are lights at the end of the tunnel for just about any situation. Just gotta be positive and strong. Best of luck to you all 💛💛

    Liked by 1 person

  27. chiaradom says:

    Just a few days ago I wondered how Seth was and I’m happy to see that he is fine and finally happy. I wish you all the best and hope that in a few years you will tell us about him and all of you, wonderful family!
    A big hug from Italy
    Chiara

    Like

  28. Linda Brown says:

    So glad to here he is doing so well! He looks wonderful! Congratulations on your addition to your family! Give Seth a big hug from Chatsworth California! God Bless you all! Thank you so much for the update!

    Like

  29. Jen Beatty says:

    I am so happy for all of you including the future addition! Thank your letting us travel this journey with you! Your family & Seth are inspiring to all ages!

    Like

  30. Rita Pulice- Cicchetti says:

    WOW, amazing…. what a beautiful smile Seth has….I am so happy to see you post all these awesome pics and the fun, normal life he is living…. God bless you and your family always…sending love and hugs to you all from Brooklyn, New York…thank you for the wonderful news…please keep posting

    Like

  31. Meg Craig says:

    Seth, you are looking soooo good. I’m so so happy to hear that you are keeping well and loving life to the limit. It’s lovely to hear that you’re going to have another wee brother or wee sister too, I bet you’re really excited about that. Do keep in touch letting us know how things are going for you. Every time I see the colour yellow it reminds me of you, it’s the same with Paw Patrol, I watch it with my great nephew, he’s the same age as you too.
    Finally, please say a great big thankyou to your mummy and daddy for keeping everyone up to date with your progress, and I wish you all the very, very best for the future.
    Lots of love to you all,
    Meg from Lanark, Scotland. 🤓 😍 🙋🏻

    Like

  32. marypipe says:

    What a wonderful post. So happy to see Seth that well, playing with his brother and enjoying life. All the best to you as a family. Will always remember you.

    Like

  33. southern3wheelingsa says:

    Wow, such an amazing difference. So happy for the whole family. Well done to Seth for being such a brave little man and getting through all his troubles, and he is still smiling. Thank you for the update.

    Lots of love and hugs to you all.

    Bev

    Like

  34. sue says:

    What a day brightener to read this news. I will never forget Seth, his contagious smile and his absolute courage. Bless you and yours always. Congratulations on your impending joyous bundle. I am sure that he or she will be embraced by two beautiful big brothers–Seth and Hugo.

    Like

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