Today: T+32

So where do i begin? Its been a little while since my last post, and i apologise for that. But we have had a few developments and I needed to process one in particular and find out more information.

So the good news first!

Look at these hands!

        

An amazing improvement and finally he has his fingers back (well most of them anyway!) He still has a couple of bits to heel but they are generally really good. The first thing he did with his hand (before they had finished dressing them) was touch his head.

 

We hadn’t realised he had never felt his head. He was surprised at how it felt but says that he likes it. Losing his hair isn’t a problem for Seth. His foot is also getting better and he is walking on it confidently.

The infection level in Seth’s blood is

However,

The Human Herpes Virus 6 (HHV6) is back, low levels in his blood at the moment and we are waiting for the results of a re-test to know whether or not he will need treatment for it.

Also, on Friday we got a devastating blow. The Graft Versus Host Disease has started again in his skin. It’s obviously not caused by the same cells as it was last time as he no longer has those cells (they were from the previous graft which the chemo killed off). GVHD is when the T cells attack the recipients cells. In Seth’s case the T cells from the transplant are attacking his skin – thinking it is an infection.

At the moment it is presenting as a red rash quite angry looking around his groin and then he has patches of the rash on his arms, legs and chest.

The rash to me looks different than it did last time. Last time is was less ‘rash like’ and instead angry red skin that was dry and peeled. I don’t really remember what it looked like in the beginning. However, last time the GVHD was predominantly on his hands and feet and, at the moment these areas appear to be pretty clear. The treatment at the moment is IV steroids at a very high dose (2mg per kilo) for 5 days, clobavate ointment and tacrolimus ointment Today he was the 3rd day and doctors feel that he is responding but its a long road – we have been here before.

At the moment Nik and i just feel deflated. All of the fighting for the past 4 and a half years a second transplant, and we feel like history is just repeating itself. It is early days we know. we are just gutted.

But all this happening has made me feel a little bit like I got complacent. I am really worried about it. Things seemed to be going so well. I guess being aware of what might happen doesn’t necessarily mean that it won’t affect you when it does. That’s the nature of the bone marrow transplant it seems. I guess that is why we take it #daybyday.

In himself Seth is brilliant.

He is still tiring easily but he is motivated to do things and get out.

The physiotherapy department at the hospital has a ‘gym’ that Seth is now booked into on a Monday, Wednesday and Friday for half hour sessions. At the moment the physio is hiding animal bean bags (which Seth loves) and getting him to find them, moving about the room. We encourage him to race Daddy to really get him moving.

The increased movement makes him breathe harder so it is good exercise for his chest. He is still having his daily school sessions and is learning so much.

He is now mentioning going home a lot more. We have told him that before he goes home he has to go to a house here in Newcastle with Nik, Me and Hugo. He is happy about that, as long as he can teach Hugo how to play he is happy! However, he is still a while away from moving on.  We don’t know exactly what he needs to achieve to get there as things change daily and every child is different. We do know though that he needs to be off intravenous nutrition (TPN). This is an infusion that runs for 18 hours giving Seth all the calories and nutrition he needs. We need to replace this with milk feeds via his button and/or normal food. At the moment he is not eating and only tolerating 20 mL per hour of milk (split over 16 hours a day). To be able to come off the TPN he needs to be on 67ml per hour (this is without any food consumption). Seth has been told this and today decided to have two crisps and a mouth full of noodles. He says that tomorrow he is going to have 3 crisps! Although we will see. We are not going to pressure him. We want to encourage him to have a positive relationship with food.

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77 thoughts on “Today: T+32

  1. Stevie B says:

    Such an amazing little man. Been reading your blogs for a while now, and to see his hands improve is so lovely to see. I hope and pray that he’s able to fight off the GVHD. So great to see him up and about on his feet! His determination for upping his crisp intake made me laugh while also holding back a tear. Such a determined little man of which none of you deserve this.
    Keep strong! Were all here for you all.
    Peace and love, and everything Yellow. ;o)

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  2. Linda says:

    I have been exactly where you are now and my heart literally aches for you all. I know this is so so hard but all you can do is keep doing what you are doing that’s all you can do and that’s all he needs and wants s big hugs to you all xxx

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  3. lesliesantos says:

    Thank you for the update!! I was fretting over how he was doing. Now I know more specifically how to pray for you and Seth! He looks absolutely amazing and so happy to be outside. Thinking of you all constantly in Hughson, California.
    XOXOXOX 💛💛💛💛💛

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  4. Sandi Warner Burk says:

    Hello again from Yreka California. Without a doubt Seth is one of the bravest young boys any of us have ever met and we have to thank Seth for getting his mom and dad to introduce us to all of them. What a brave and wonderful family! Our hearts and prayers are with all of you every single day and I’m proud to be on Seth’s Team! Yellow has always been my favorite color and now it is even more special because of Seth. What a fantastic brother Seth is and his baby brother will learn many things from him I’m sure! Lots of love and hugs to Seth, his mom, dad, and baby Hugo ❤ ❤ <3<3

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  5. southern3wheelingsa says:

    Seth is just such a cutie, such a big smile even for all the dramas he has and is going through. Love his slippers. Keep up the fight Seth you are a very brave young man. Lots of love to you and your family. xoxoxo

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  6. Katy says:

    firstly, your boy is a total sweetheart!! Secondly, this blog is amazingly well written and so informative. Things seem to be going so well with Seth at the minute I’m so pleased to read this a month post transplant! I’m a nurse myself and I recently went for a job interview to work on the bmt unit that Seth is on, their information leaflet had this blog address on it and I was very intrigued.. I’ve now read the whole thing! I look forward to possibly meeting you and the rest of seths family in the future! Xx

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  7. Tricia Brennan says:

    Thank you for taking the time to update us. The bravery of you all is awe inspiring, I just love to see Seth’s brilliant smile and the love that obviously abounds in you all. We have everything crossed for a speedy recovery and he is remembered in our prayers. All our love and best wishes from Newhaven, Sussex.

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  8. Meghan Mack Lindenfelser says:

    My heart goes out to your family. Seth is the bravest person I know of! His strength amazes me! I pray for him Daily and will continue to do so. I’m so glad his hands and feet are improving. I pray that the rest of his problems will heal as well. You are my Super HERO Seth!! Keep fighting and my God Bless You!!!

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  9. Linda Brown says:

    You two are so strong! I pray for little Seth and his family all the time. It’s so nice to see his hands healing well, but sorry he is getting a rash. Love to see him with that big smile on his face, he is one brave little boy! Stay strong, and have those good thoughts, hope to see light at the end of your very long tunnel. Sending our best from California!

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  10. marianto230972 says:

    I go every day on your blog to see how my little strong and brave friend is doing… It is great to see how his hands are much better and I will continue my prayers for him to win the battle and that his rashes go away. I just feel so much endearment for Seth and you, his family…. You all have been a great inspiration to me and my boys!! God bless you and my dear Seth!

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    • Sandi Warner Burk says:

      I’m so happy that we all “met” Seth and his family online as many of us out here do not have family, or our family lives far away. I really look forward to updates on Seth and I’ve joined others to pray for him every day because this Champion fighter has been through more than many of us can even comprehend. His happy eyes show that in his hopeful heart he’s blooming like a wildflower grows, a yellow one, in the Desert despite his unimaginable pain and fear. Imagine. I’m grateful to his wonderful parents for putting his signs up seeking strength from others before his surgery because now Seth is in our hearts and he’s loved around the World! I love that handsome face and the light in his eyes is a such a wonderful sight every time I look at his new pictures! God bless this wonderful and very brave family. We are with you and Seth every day, one day at a time.
      ❤ Sandi in Yreka California

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  11. Amanda Bise says:

    Prayers to you and your family. I’m so inspired by Seth and I hope the delay between updates is because of something positive and good. I am wishing you all the best and love from Indiana.

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  12. Sandy Kalpakoff says:

    Sending love, prayers and positivity to your family and my dear little man Seth. Please continue to progress forward at your pace and know how much wonderful attachment you have made to so many all over this big world. You have prayer champions constantly uplifting you all because we are so invested in you and your family!!! Our hearts are filled with care for you!!! xoxo

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