Today: T+8

So a few more days have passed and I don’t know if I am saying things are better or worse. It’s such a confusing time at the moment. Somethings are looking better, but then again he seems to be struggling in other ways.

His hair has started to fall out. We’ve talked to him about that and he really doesn’t care. Which to be honest neither do we. Obviously you don’t want your child’s hair to fall out. But we know why it is and it is the least of our worries. It will grow back!!

Seth’s skin is a bit better, a Treosulfan rash is like REALLY BAD sunburn, the skin swells, goes bright red and is hot to touch and incredibly sore, then as it gets better it starts peeling. Ignoring his hands of the moment we appear to have gone through the worst of it and although his legs are stills red and swollen, they are starting to peel and are looking a lot better than they were.

However his hands are still agonizingly painful. He is able to rest when they are bandaged up. However, the minute we take off the bandage to change it the air hits them and he screams in pain. I have started giving him bolus’ of Fentanyl every 20 minutes for an hour before we change his dressing, but it does not seem to help him when the air hits his hands. The sores appear to have got bigger, but they are dry and not weeping. It is the chemo attacking his already damaged hands and unfortunately we have to wait for the effects to go away. We just have to try to keep him as comfortable as possible and infection free until then.

His mouth and tongue are covered in ulcers, but they are bleeding a lot less and 4 times a day mouth cares appears to be enough to keep his mouth clean and free of mucus build up.

As his skin and mouth appear to be getting better, his breathing has slowly been getting worse. His oxygen requirement has been increasing and he is clearly working harder to breathe. Chest X-rays have shown some changes, but only very slight. However, this was enough for him to be suitable for SCARF research being conducted here and at Great Ormond Street Hospital. It is fairly common for children with immune problems to develop breathing difficulties. Sometimes these get so severe that the child needs assistance via intrusive ventilation. There has been some research recently that has evidenced that non intrusive early intervention reduces the likelihood of the patient going on to need intrusive breathing support later on (i think about 60% of the time). The non intrusive ventilation is via CPAP (Continuous Positive Airway Pressure). We were asked if we wanted to take part in the study, which we thought about and decided to go ahead as the CPAP will give Seth rest to be able to recover and not have to put as much effort into every breath. Once our consent Seth’s name was put into a computer which chose whether he would be part of the control or test group. Seth was in the test group. This means that he has been transferred to the Paediatric Intensive Care Unit and for 12 hours a day is on CPAP ventilation. It’s a four-day trial so as long as during that time he does not get to the point where he needs intensive care he will return to his normal room.

Infection wise we still do not know what is causing the high inflammation markers or the high temperatures. However, the marked in his blood have been going down for the last couple of days – fingers crossed they keep going!

In himself Seth is coming back slowly. Yesterday he insisted he was playing Paw Patrol and that he was getting down off his bed to do so. He managed to make it down there and get all the pups in the lookout, however, then was tired and I suggested he got back in bed. It is heart breaking watching him desperate to just play and it be such a struggle for him.

Still no sign of the new cells, but that’s not expected just yet. We could see them anytime from today onwards so – BLOOD RESULT WATCHING is on!!!!

The past two days have been better – starting to go in the right direction. But things could change back very quickly, and might do so when the new cells really start to engraft. We just have to wait and see and take it day by day.

having a nap during time off the CPAP. this is just a normal mask with hudrated oxygen going through it.

80 thoughts on “Today: T+8

    • Marita Healy says:

      It is heartbreaking to see what Seth is going through. I dearly hope things start improving for him soon. I pray that you all can get through this and start seeing positive changes soon.

      Like

    • Tammy Jo Borstad says:

      Seth and your family are in my thoughts and prayers! His story is so heart felt! It just breaks my heart, I can not even fathom what Seth is going through, and as a mother I can not imagine the pain that your going through knowing there is nothing that you can do to take his pain away! May Angels be with you!

      Like

  1. Missy Washburn says:

    So happy you had some time to share! Thank you for that…I find myself sharing Seth’s story to so many so support and prayers can grow. Your day by day has to be unbelievably exhausting so bless you, Seth, your husband and family. I hope and pray every hour that passes can bring a positive improvement to you all. Hugs, love, support and prayers from Memphis, Tennessee 👍 a thumbs up for you all!

    Like

  2. Nikole Kelly says:

    Sending you strength and positive thoughts from NY. Stay strong Seth! I hope you are back to playing Paw Patrol full time very very soon 💛

    Like

  3. wesley bill says:

    I been watching this little results every day. Breaks my heart to a small guy has to go through this.

    Such a.hard thing for seth and his parents you guys have hearts of gold

    Keep up the fight

    Like

  4. Debbie says:

    Huge hugs, much love, and loads of prayer going out for ever inch of the little hero, inside & out! And for all his amazing family!

    Like

  5. Zoe Cullen says:

    Just read this to my children who had the same reaction as me, what a brave little boy ! Cried when I saw the pictures of his hands, must be unbearable as a parent to watch. Stay strong and sending lots of love x

    Like

  6. sonia says:

    Praying god to take his pain away, thinking of you always my hero. Much love to Seth and his family. Much respect

    Like

  7. Patrick says:

    Stay strong Seth and Seth’s family. I can’t wait to get news and every day i’m thinking about you and hope that you become healthier every day. I pray for you little big fighter!!!! Hugs and love from Germany.

    Like

  8. Frank says:

    Always keen to see how Seth is doing. Hurts to see his hands at the moment so must be so painful for him. Sounds like he is being very brave. You must be so proud of him! Keep strong! 🙂

    Like

  9. Mia says:

    My thoughts are with Seth. I send you a lot of strength and hope that he can start a better and healthy future soon. I wish him that he can finally enjoy life like any other child. do not lose faith. remains as strong.

    Like

  10. Teresa Herren-Mcguire says:

    Hi,he is such a strong and courageous boy! I’m a registered nurse practitioner who specializes in auto immune and immune disorders and the high inflammation markers could be do to the inflammation in his skin, his skin is so red and inflamed it could definitely make his inflammation markers go up. Hang in there Mamma! Prayers coming your way for good blood results!

    Like

  11. Barbara newman says:

    This just breaks my heart guy’s, much love to you all, and I have asked all my family to say a little prayer for all xxx

    Like

  12. Greicy says:

    Que Deus o abençoe Seth! E que toda sua familia esteja cada dia mais forte para continuar te dando todo esse apoio. O amor da sua familia é algo lindo e único. Fiquem todos com Deus! Bjussss

    Like

  13. Edna Linsman says:

    Stay strong brave boy. Thoughts are with Seth and all his family. Hope the pain goes soon. I wish you all the strength to keep fighting this. Much love xxx

    Like

  14. Edna Kinsman says:

    Stay strong brave boy. Thoughts are with Seth and all his family. Hope the pain goes soon. I wish you all the strength to keep fighting this. Much love from myself and family xxxx

    Like

  15. Linda says:

    As someone who has watched their child go through this recently I just want to say
    I know how hard this is on you and how helpless you feel but you are doing everything you can as a parent for your little man . It’s horrible watching them being so ill and weak etc but keep doing what you are doing cause even though you might feel like you aren’t able to help him just being there and showing the love and support you have been doing is all he needs right now

    I am sending you all my love and prayers xxxxx

    Like

  16. Linda. Valenzano says:

    Thank you for the update, so many here in our small town of Lemont, il. Are praying every day for that beautiful little boy. I ask God everyday to please make one positive change for Seth, be it big or small. sending strength to you, his Parents, prayers for you. May God hear all the prayers all around the world for Seth. Peace.

    Like

  17. Olivia says:

    Tears stream down my cheeks as I think of the time you are going through. Lying here with Oscar beside me thankful for our outcome. I hope to meet you in the future at one of the family days. Love to you all x x x x

    Like

  18. Rea Hunter says:

    I’ve just had a word with myself – after decided she was having a nap at 4pm my 3.5 year old decided 10pm was the perfect bed time tonight – and I was annoyed, short with her, frustrated and stressed that I still have to prep for work tomorrow.

    But I should be thankful – that she has the energy and health to play until 10pm, the freedom to do so and that I don’t have to go through what you guys are every single day.

    Sending a hug, and a prayer – and if I’m not fully prepped for work tomorrow then sod it – family first right?

    Sending kisses to you all.

    Like

  19. sheila says:

    Just want to send love to all of your family and wish your wonderful son with the beautiful smile well again soon. He has touched many hearts. A brave beautiful boy. I know you dont know me but if ever me and my family could help in any way please let us know . Xxxxxxxxxx

    Like

  20. Meg McCrae Craig says:

    Keep fighting wee Seth. You are all such an inspiration to so many people.
    I think about and pray for you to get better every day Seth. xxx

    Like

  21. Margaret Brammaall says:

    Keep fighting little soldier Seth .hope tomorrow you feel better than today. Seths hands look so sore bless him he shouldn’t have to suffer so much pain . I can’t imagine what you Leanne and Nik are going through watching your beautiful boy suffering so much stay strong . I will be praying for a better day and hope the magical will be there tomorrow love to you all xxxx
    xxxx

    Like

  22. leisa says:

    What a strong young boy, a total inspiration, keep fighting little soldier and win this war, sending hugs kisses and nd prayers to all the family xx

    Like

  23. Emma Jayne Sharman says:

    Oh poor little Seth. My thoughts are with you all. I met Seth briefly through his childminder at little Stanion play group. I am so sad to see is poor little hands. He is such a lovely boy and a credit to you both. I wish him all the luck I the world in his recovery. Thinking of you all 💕

    Like

  24. Viviana C. says:

    It breaks my heart to see how this lil boy has to go through all these pain… I can’t even imagine the pain you’re experiencing as a mother…hang on there things will get better, much love xxx

    Like

  25. Michelle says:

    Saying prayers for you Mum and Dad and of course Seth. He is going through so much physically and I’m not sure how anyone could handle that unless he is a little super hero, which he is! Everyone out there keep praying for Seth! Xo

    Like

  26. Jon miklich says:

    So sad to see a little child suffer. Sometimes I wonder why this has to happen. So many people are pulling for Seth and his family.. Bless everyone.

    Like

  27. Mitchy says:

    Thank you Leanne. You are truly an angel! ! And thank you to the parents, nurses.and survivors that share on this blog as well. As a mother myself, and a person that fell so in love with this little man, any words of comfort or shared positive experiences help enormously! God Bless my little hero.

    Like

  28. angelkhandra says:

    Dear Leanne and family – I think about Seth and your family all the time! I have a cold right now, and I think about how inconvenient! And I feel bad! And then I think, who am I to complain!? I think about what my son (who had cancer) and your beautiful little boy have had to suffer day in and day out and this is nothing, NOTHING to what they have had to suffer and are going through. I understand the worry you must feel watching your son in pain all the time, not even able to play. What a brave boy! I feel so inspired by him! I love your little boy so much and all I want is for your family’s suffering to end and for life to go on as normal! I wish it with all my heart! I will be thinking of you tomorrow especially, Leanne, on Mother’s Day (at least it is here in the US) and sending Seth all the healing thoughts I can muster to give you a Mother’s Day miracle! You all need that magic to start working NOW!!!

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

    Hang in there little Seth! The world is rooting for you! Love you, Honey!

    Like

  29. Eileen says:

    Seth, you are a strong and brave little guy. You have touched my heart ♥. I am lifting you up in prayer from Michigan.

    Like

  30. Carol Frost says:

    Praying every day for you and your family. May God be with you all. Hope that the new cells soon take hold and he gets better and can play. Stay strong we are all behind you and your family.

    Like

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