Today: T+25

25 days post transplant already. How did that happen?!?!

Best text ever!!

So we now have confirmation that the immune cells we have been watching rise each day on the bloods ARE Nik’s, so the transplant has found the marrow ands grafted. So that is one hurdle overcome. This means that he has cells and is producing cells that are all donor. With regards to problems caused by the new cells we still have to wait on that one.

At the moment things are going really well. His skin is great and he is not needing any additional oxygen.

His hands are also looking amazing (in comparison to what they were). We are hoping that when his dressings next need changing (Friday), he won’t need the bandages anymore. It is likely his wrists will need a dressing, but hopefully he can have his fingers back!

        

his heel still has a little way yo go. But he is walking on it now so hopefully it won’t be too long!

We have been able to get him out everyday, going to the park for a walk. Before he returned to hospital this time, Seth hated being outside, he would complain he did not like the sun, would not want to be outside at all. Now he loves it and is saying he cannot wait to ride his scooter outside. So for us that is brilliant to see. Our little boy just wants to do normal everyday things.

Immunology wise the doctors are still happy with him. Sunday and Monday this week his levels dropped and it sent me into a mild panic. A chat with the doctor and a text to a friend who is also a parent on the ward soon eased my fears. Their cell count goes up and down often and twice daily bloods are necessary to monitor Seth’s red blood cells and platelet counts. But they also mean his immune system is under close monitoring, sometimes it might be too much information.

Seth is still needing regular platelet infusions, almost daily. This is again common at this stage of transplant so at the moment it is not a major concern and is being managed. The minimum level they allow his platelets to drop before they transfuse is 50.

I found this sheet from January – that is how long Seth has been without any immune system, amazing that he made it this far so well!

This result sheet is from January. shows how amazing it is that his neutrophils are now above 4!!!.

Above i mentioned speaking to another parent about Seth’s neutrophils. When your on a BMT ward you get to know other parents, you are all there a long time, and you are all going through a similar process. However, the reasons we are there are different and even if the diagnosis is the same, the child is different. So i would never advise people to compare their child with another, no matter how similar they seem. Speak to your doctors, use the information from other people’s experiences to help you have expectations, but be very prepared for your child’s journey to be different.

Seth’s energy levels are getting back to normal and we have had a lot of playing this week. Including some time using his bed as a mountain to run away from Daddy – dressed as a superhero – as you do!

    

Doing his own nebuliser whilst watching his favourite programs on you tube!

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63 thoughts on “Today: T+25

  1. paulb1983 says:

    Hi Leanne, I hope you are well? How is Seth doing today? I was wondering if there is any way to contact you guys at all? I found the address for the hospital to send some mail, but wondered if you had a phone number too? Best wishes! Paul, Reeta and our four furry ferrets xx

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  2. Kathy says:

    Hi Seth, Your dressed up like a Super Hero Today I see, WOW, Looking Good !!!! I like that 🙂

    Nice to see that Big Smile on your face, and Glad to hear everything is going Great too !!…I posted on Twitter that you were in a Superman outfit, I guess I got that wrong, Sorry about that, I am not sure what Superhero you are but I know you definely are one! “Seth The SuperHero !!” 🙂

    Everything here in New Brunswick, Canada where I live is going pretty well, is was really Hot yesterday, and it hard to get to sleep last night, I had to get my 2 boys to sleep in the living room in the couches with the windows open where the breeze came through. And I think it’s going to be warm again today. I bet your in a nice air conditions room eh?

    Well I will let you go, because I know you are probably watching your favorite shows on You Tube, or doing a lot of reading from your Fans !! You and your family have a wonderful day today OK….Sending HUGS to you all !!

    From Kathy, Philip and Benjamen

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