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.

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80 thoughts on “Today: T+8

  1. Jyotsna Wase says:

    That’s our Seth! On his way to getting fit and playing his guitar, growing up to ride that bike which is too big for him now, watching fireman sam all day and not letting Hugo watch anything else, running all over the place and making you run behind him. On his way 🙂 He’s almost there, Leanne 🙂 🙂

    Liked by 1 person

  2. southern3wheelingsa says:

    I am so sorry to see this brave little man going through so much at his young age. I can understand as parents you too are going through so much. Just remember that there are a lot of people who are praying for your family and supporting you, even though we are not there physically, we are there with you in spirit. Stay strong. Sending lots of hugs and kisses to a beautiful brave little boy Seth. xoxoxox

    Like

  3. Kari beckwell says:

    i try to get on the computer once a day at least to check on Seth (and family’s) condition. My heart screams out for all of you and wishes so badly for peace upon you all. So hoping his tiny hands heal so the pain will subside for bandage changes. Sending love and hope for you all. Your such an inspiration Seth. Wisconsin loves you…your in all our hearts and thoughts 💕

    Like

  4. Kitty Kulcsàt says:

    I’m thinking of Seth every day. Stay strong! 😦 I can’T say, what I feel.. 😦 Love from Hungary! ❤

    Like

  5. victor guerrero says:

    I will be praying for this little guy. I’m so glad I found this blog. He is such an inspiration. May god be with you and greetings from the states. You will get through this! Stay strong!

    Like

  6. Andrea González says:

    Seth’s such a brave little boy! I fell in love with him the moment a saw his video. I think of him very often, thank you for keeping us posted on Seth’s health.
    Not only is Seth a hero, you, his mommy and daddy are too for doing all you are doing for him!
    I will keep you in my prayers!

    Lots of love from Mexico!

    Like

  7. Donna says:

    Seth is a true superhero, his superpower is touching our hearts. I don’t know if you have religious or spiritual beliefs but I’m sending every ounce of my positive energy to you Seth, sharing love and strength with you. Xxxx

    Like

  8. Arjun says:

    SETH – the future Nuclear Physicist 🙂 . I just love the way he says yes when you ask him ” Did you do Nuclear Physics” – He says “Yes” Oh my :* . Seth is gonna be back Yipeeeeee. Its almost over, the battle is over. Seth – Our hero and bubula 🙂 Really awaiting happy smiling pics of him playing “FireMan SHAM” hahaha

    Like

  9. val Miller says:

    I am from Seth’s home town of Corby and at one point Seth was at nursery with my Granddaughter. I and my friends are praying every day for Seth, precious boy.

    Like

  10. Cindy Austin says:

    Keep going Super Seth it must be so tough lil man but you have all the special powers to get through this and then take on the world ❤️❤️❤️❤️❤️ xxxxx

    Like

  11. Caterina says:

    It’s very touching the fact that a little boy is going through all of this, this kid is so amazing, even if he suffer a lot everyday he doesn’t put himself down and he continues to fight this evil disease and I really believe that he’ll beat it, he’s stronger, you all are stronger! Keep going, I’m supporting you, you’ll make it.
    A warm hug from Italy :))

    Like

  12. Mon says:

    It’s all heart breaking. And the pictures of his hand is….what do I say? 😦

    “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” This was bittersweet, his mentak strength but also he got tired then.

    Happy Mother’s Day to Seth’s parents and my Seth 🙂 I pray for you, baby.

    Like

  13. linda harris says:

    Hi thinking of you all 😘stay strong I no Seth can beat this 😍😍😍😍😍🚒🚒🚒🚒🚒🚒 xxxlots of love from Spain xx

    Like

  14. Jackie Casey says:

    I read about Seth back on #wearyellowforseth and wanted to check on his story im praying for a strong recovery what a brave strong little one! He has touched my heart all the way in Los Angeles.

    Like

  15. trisha lane dunne says:

    Hey Seth keep fighting little man you are truly a super hero and inspiration, you have a wonderful mummy and daddy and fantastic grandparents , I think of you every day keep smiling Seth you are nearly there X thumbs up Xx👍🚒🚒🐛🐝💞

    Like

  16. Anne Kent says:

    Sending you all love and hope through these difficult times! My grandson was diagnosed aged 2 with leukaemia so I know only too well the suffering these little ones endure & the helpless feeling as you stand by watching. Hoping this little fighter continues to battle on, no one should have to go through this! Thank you for sharing , we watch and eagerly wait xxx

    Like

  17. Lesley says:

    What a soldier – even through the pain and discomfort still determined to play Paw Patrol 👍. Still following Seth and hoping and wishing for his speedy recovery. His poor wee hands break my heart… Sending love from the bottom of my heart 💛💛💛😘

    Like

  18. sophie lister says:

    I really hope that seth is feeling better soon, it makes me sad whenever I look at this page, and seeing what seth has to go through at such a young age makes my heart break. His hands look so painful and I hope that they get better soon. I am 13 and I cant imagine having to go through all that at even my age, never mind his. I have donated £30, but I saddens me that I cant do more to help our little hero. Give my best wishes to seth

    Like

    • LJLane says:

      Sophie you are very kind. Your support is more than we could ask for. When you are old enough maybe you could register as a bone marrow donor, then you could possibly save someone’s life.

      Like

  19. Becs says:

    My heart cries out to you Seth, just know that God is with you …I believe this because through the love of your parents there is hope and support from everyone around the world 🙂 stay strong little hero ❤ you will get though this 🙂 I know you will xox love you all the way from NZ :*

    Like

  20. Jennifer C says:

    OUr family is praying for Seth and your family. We have 2 immune deficient daughters and our hearts are with you. ❤️

    Like

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