Today: T-2

So as the last day of chemo dawns Seth is starting to struggle again. Over night he had a few vomits and one temperature of 38.4. When he woke this morning he was complaining of being cold and of having pain in his shoulder. He continued to  vomit, particularly after a drink of water or administration of oral medication.

The day continued and Seth continued to struggle. The pain in his shoulder appeared to be incredibly sore, he did not want us to touch it and lifting him was difficult as he did not want us to touch his shoulder. The doctors were concerned it may be an infection in his chest or inflammation in his diaphragm (apparently the nerves in the diaphragm can cause pain in the shoulder – who knew?!). Seth had an X-ray which showed no changes in his chest. But it seems that his fluid balance is significantly positive (meaning that he has had more fluids in that out). Normally for you and I this would not be a concern as our bodies would expel the extra fluid. However, Seth is having a lot of fluids put into his body (such as medicines) so his body may not keep up. As such he has been given a drug this evening that will cause him to expel some fluid. The hope is that it will make things easier on his chest and diaphragm.

Also during this particularly ill period in the early afternoon his feet were a horrible blue/grey colour, which was upsetting. Especially as he was crying because he felt so cold. Eventually he warmed up and his feet came back to a normal colour.

At 4pm he spiked a temperature of 38.8 and was given paracetamol which helped him fall asleep. Upon waking he was happier, warmer and more himself so he sat on my knee and watch some television. We then did some colouring in his bed, he had his bath and went to sleep. Although as he went to sleep he was again complaining that he was freezing cold.

Seth is also complaining that his skin is sore. The Treosulfan (chemo drug) is known to cause skin problems, which is why Seth has to have 3 baths per day and cream applied to his skin 3 times per day. This morning he was quite red and sore looking but his baths made it better and by the third bath it was much less red – this may not be related but he was soothed at least!

So at the minute Seth is really unwell and feeling rubbish. Were not really sure why, it could be side effects of chemo, or it could be something else. Only time will tell.

Keep taking it day by day

Just a short update today as I want to try and defy Hugo by getting some sleep!!! ;D

38 thoughts on “Today: T-2

  1. Missy Washburn says:

    So so sorry for the tough day! Hate hearing of his struggles and I know it is hard for you all to see him feeling so badly. Be strong and we will send everything we have to support you all! Hugs from Memphis, Tennessee 👍


  2. Teresa McGuire says:

    Hang in there! You are almost there! Sending prayers your way from Stillwater Oklahoma,I asked God to make his next few days as easy as possible do and I prayed for a successful transplant. This little boy is DEFINATELY a big Hero!


  3. Beatrice says:

    Stay strong! Thinking of you and the Little Man as he is preparing for the big transplant ! I was a marrow donor for my brother in 1977. He was one of the first in North America to have this transplant of marrow…he was 6 months old and is now 38 and healthy!! Miracles happen!


  4. Lovelle says:

    just wanted to leave a message to let you know you’re in my prayers. Stay strong!!! May 1 is almost there. We’ll continue praying for Seth and your family. HHUUUUUUGGGGG!


  5. Margaret Brammall says:

    So sorry to hear that Seth isn’t feeling well today.just one more day to go hope and pray he will be better tomorrow . Keep your chin up Leanne and hope you get some rest lots of love to you all Big kisses to Seth and Hugo too xxxxxx


  6. Cindy Austin says:

    Hope you feel better tomo lil chap 😚😚 for such a lil person you are having to endure so much pain everything crossed that it will all go away once you get your new magic in your lil body . Take care Seth,Mummy,Daddy and Hugo xxxxxxxxxx

    Liked by 1 person

  7. Mitchy (Michelle) Leinen says:

    I sure wish he didn’t have to have such tough days. I just know I couldn’t handle seeing his little face sad as you always post such happy photos. I sure hope that his shoulder feels better tomorrow and he starts to lose some of that fluid. You get some rest Leanne! Much love to you all from South Dakota!!


  8. lesliesantos says:

    My deep heartfelt prayers are with Seth, Nik and you, for strength, healing, and comfort. What a tough, tough road all of you are traveling and my heart breaks for you.
    Xoxoxox 💛💛💛💛💛


  9. Jack Ricau says:

    Thinking of Seth every day. Also thinking of his family. Saying prayers every day for his getting well and recovery. It’s amazing how strong your family has been. We’re pulling for you in Baton Rouge, Louisiana

    Liked by 1 person

  10. Naila says:

    Sending lots of love and prayers for Seth – my niece and nephew have both been on the unit at Newcastle for SCID and know full well the challenges, hardships, and difficulty faced day in and day out for parents, families and most of all the little souls who go through the gruelling treatments. There is always hope and keep hanging in there, even though there are days when it seems there isn’t. He is stronger than you will ever imagine and he will get that strength from your love.


  11. Dulce says:

    Sending all good vibes Seth! I have been counting down the days you’re almost there so stay strong! And keep on smiling! 😊Can’t wait to read about you tomorrow 💛💛💛


  12. eva2424 says:

    Hi Leanne! I live in Boston Ma and go to school there. A while ago I read about your blog and was really touched by it all. I am trying to understand Seth’s condition as best I can but I have some questions. If Seth has recovered from his Grafts Skin virus, why are the baths so necessary? I was also wondering what the chemo does for Seth before he goes through the operation. Thank you so much for the daily posts and medical information you supply. And, if how I could send Seth something by mail.
    All the best


    • LJLane says:

      Hi Eva. The graft versus host disease was caused by the previous transplant- the cells from this attacking Seth’s skin thinking it was illness. One of the chemotherapy drugs- Treosulfan – can cause problems with skin. So all children having it have to have high levels of skin and mouth care. Risk is slightly higher for Seth because the graft versus host has caused damage to his skin. So the chemo may go there and cause problems.

      Seth has chemotherapy to condition his bone marrow ready for transplant. Although he had very few cells left in the marrow he still had his own original cells and donor cells. Adding his dad’s cells into this would cause further issues. So the chemo empties the marrow to reduce the risk of graft versus host again in the future.

      Liked by 1 person

  13. Kari Olson says:

    Praying praying praying for Seth and your family. I worry all day until your updates. Love you love you love you sweet boy! Hang in there, Honey! Sending love and healing vibes from Minnesota!

    Kari and Kimo (the dog) from Minnesota


  14. Victorius says:

    My heroes, all of you. I am touched by your love and selflessness. If all of us spoiled people could live one of your days, the world would calm down and appreciate each other. Thank you for updating us. I will pray for rest and peace and hope… and of course–health for Seth the warrior!


  15. susan60657 says:

    Will pray tomorrow brings a better, more comfortable day for Seth.

    And, I’ll be wearing 👕 and lighting one candle for Seth and another for you, Nik and Hugo at Chicago’s Holy Name Cathedral.



  16. sallybrewer4 says:

    Hello Seth, Mummy and Daddy,
    My name is Sally, as a student nurse my placements were based in Kettering and I had the absolute pleasure of meeting your wonderful little boy. He is such a credit to you and what a fighter! He has to battle such terrible things that most adults wouldn’t be able to cope with, but he does it all in Seth style. I hope tomorrow brings a better day, and keep on fighting Seth we’re all rooting for you! Ps yellow is my favourite colour too, good choice 🙂


  17. sallybrewer4 says:

    Hello Seth, Mummy and Daddy,
    My name is Sally and as a student nurse I did my placements based in Kettering. I had the absolute pleasure of meeting your wonderful son. He is such a credit to you and such a little brave fighter! He deals with so much more than any person could imagine and does it all in Seth style. I hope tomorrow brings a better day for you all, keeping fighting little man we’re all praying for you. Ps Seth yellow is my favourite colour too! Good choice 🙂 x


  18. Jen Miller says:

    I am from Germany and I am reading your blog everyday. It really makes me happy when Seth is feeling well but as far as he feels worse, I really suffer with all of you. It’s incredible how strong he is and especially how strong you are! You have all of my respect. I really wish I could help you or do something to make you feel better.

    Thank you for sharing your experiences and being so open-minded about the diseases. That’s not normal and I really appreciate that you are doing it. When I see Seth smiling it makes me so happy. And it makes me realize that even though life is tough there’s always a reason to smile.

    Your son is really adorable. You are amazing parents. I wish you a lot of love and strength! Stay strong, because you do it so good. You inspire people, as far as I can see. Your whole family is a role model for me. Thank you for that!

    I hope to see Seth and you happy everyday and hope that the transplantation is going to be fine.

    Lots of love from Germany.


  19. Sophie says:

    Sending you the biggest hugs Seth, and to mummy and daddy too. Keep fighting little man, really hope your feeling much better very soon xxxx


  20. domesticdutycalls says:

    Prayers for Seth and your family as always! Thank you for sharing your family’s story and struggle. You are a pillar of strength, as is Seth.


  21. Tina Mayhall says:

    Huge prayers for your family and Seth in particular. My nephew was diagnosed with X-linked Hyper IgM Syndrome (or Hyper-IgM Syndrome 1) when he was 6 months only and had his BMT just before his 1st birthday. He turns 11 yrs old in May and the struggle to just get through each day is unreal. My nephew was so thrilled to see that there was someone like him that he happily wore “Yellow for Seth” and sent some pictures of himself at the local firestation. If you are interested, my nephew (Joshua) would love to communicate with Seth somehow as it seems they have many things in common.

    Sending positive energy for Seth’s 2nd BMT and recovery. <>

    Tina M.


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