Today: Bare with us.

Today we had a chat with the Professor on the ward. Seth is continuing to spike very high temperatures and his liver enzymes are high. His breathing rate is up (meaning he is working a bit harder), but he is currently maintaining the oxygen level in his blood on his own. The doctors are worried about him, but we need to continue to transplant as if we delay it’s likely he will get something else.

So today he has started the prep for the op. The graft he has now has come back and is causing problems with his blood and skin. He is needing blood transfusions everyday. So he has had a drug called Campath today which wipes his immune cells. So hopefully that will help him a little in terms of his blood and skin.

He is now on two treatments for the HHV6 and we really hope that these start to work soon.

Transplant was always going to be tricky, but it’s now even more tricky and when a Professor says they are worried, you know it’s time to worry. So we have a hard few weeks ahead and we may not get round to posting updates or responding to your amazing messages. But your support has been amazing and helps us deal with what’s ahead.

However, he is still playing with his fire engines and paw patrol toys, he’s watching crafts and keeping his dad and I on our toes. If anyone can do this Seth can!

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67 thoughts on “Today: Bare with us.

  1. chelsea says:

    Hi, my dad is a fire captain in Hawaii, I would love to send Seth some fire shirts from Hawaii contact me via email and I will mail him some!

    I’m not sure how this works if you can see my email. If not reply to my comment and I will leave you my email

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  2. Miguel Martinez says:

    Wow Seth, the road is plenty of dumps but you are going to skip them all. Hoping the transplant day arrives with Seth in the best conditions.

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  3. MJ says:

    Prayers for your sweet little one. I am so sorry you all are enduring this, especially him. From one mom to another, my heart goes out to you all.

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  4. Olivia says:

    I think Seth is in the same room that my son Oscar was in when he had his transplant in Feb 2012. I see transplant day is 1st May, Must be positive as Oscar’s birthday is on 1st May. You will all be in our thoughts and prayers.

    Olivia McLaughlin

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  5. fulya akipek says:

    there is always a hope! Sending all my positive energy to you…you are a wonderful family and will get over this. Seth is our little hero!

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  6. Kathy says:

    Hi Seth, my name is Kathy, I live in Canada, far away from where you live :). I wore Yellow for you and so did my 2 boys on YELLOW DAY for Seth. I have been thinking about you ever since and wondering how you are doing. You certainly are a brave man that is for sure, a lot braver than I am. I just wanted to let you know that I think you are a very strong person and a big boy to go though what you are doing. My cousin was very sick too, and had to go through chemo and she was only 8 years old, it was hard, but she is doing great and you will do awesome too. Say hello to you family for me and Have a Wonderful Day and keep that great smile of yours on your face because your some handsome. I bet you have lots of girlfriends 😀 …I love the color yellow too by the way …Have a Happy Day Seth x x

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