Today: T-3

Another day closer and still taking it day by day.

Seth woke happy this morning, but had a temperature of 38.6 at 6am and a small vomit. He was happy to be left with the play specialist, dressed as a superhero (standard…), whilst I took Nik for his GCSF injection and when I got into his room he was lying down watching cartoons on his IPAD. But when I had scrubbed and got into his room properly he got down off his bed and we had a game of basketball!! However, he quickly tired and we then watched a DVD and he fell asleep.





Shootin' hoops....

Shootin’ hoops….

Exactly the same as yesterday at about 1pm he started to complain that he was cold and asked for more and more blankets on him despite being fully dressed. Again we kept a close eye on his temperature and it was, once again, totally fine. He fell asleep and woke at 5.30pm and when i picked him up to put him on the toilet he complained that his skin was sore, so i ran his bath, bathed him and put his creams on. The whole time he was really upset complaining that he was freezing cold. But still no temperature, at 6.20pm he finally spiked a temperature of 38.3 and did one vomit. After the vomit he was totally back to his normal happy self! Sat up colouring in paw patrol characters!!!

His bloods today (the ones in bold  are todays, the other number is yesterdays).

HB –77/86 – Seth’s cut off is 80, so he had blood today which made him a bit red. Hopefully this will give him a bit more energy tomorrow. Again it looks (fingers crossed!) like the speed his red blood cells are dropping at is slowing down.

Platelets – 42/73 – These seem to continue to be dropping at about 20 points per day.

CRP – 76/90 – This is still improving, so more head scratching as to why he is having these temperatures.

ALT – 353/369 – Liver function has improved slightly.

Also today we found out that Seth is no longer testing positive for HHV6 virus. Which is great news as it gives him one less thing to battle. It may return as he will carry it (as you would the chicken pox virus or the cold sore virus) but for now it is dormant. So they are dropping one of the anti-viral that he was on to treat it and halving the other. So hopefully this will reduce the impact they may have been having on his liver and kidneys.

The worry for me is that two days in a row he has been fine in the morning, then been complaining that he is freezing cold in the afternoon until he finally vomits and spikes a temp. He is also continuing to need Oxygen when he is asleep at night (but weirdly not when he is asleep in the day).

BUT 3 days before transplant I am happier with Seth than I expected I would be. I am entirely happy with him? No, but I did think we would be having more problems with the HHV6 virus and I had prepared myself for things to be incredibly difficult this week. However, the effects of the chemo can take 7 to 10 days to come into full force, so we have that to come, alongside him receiving stem cells and us waiting to see how they react to his body. We have a difficult few weeks ahead, but like i say day by day, and today, we’re in a better place than i expected to be.

Tomorrow, well tomorrow we will see.

24 thoughts on “Today: T-3

  1. Atyka Ditto says:

    Wanted to say hello to our hero Seth!!! We sent him a package about two weeks ago so it should be arriving soon!!!! It has a coloring book, colors, Paw Patrol puzzles, and a Texas Ranger shirt! I sure hope he knows we think of him everyday!!! The package also had lots of letters from my 6th grade class here in Granbury, Texas!! We love him lots and send our prayers daily for him!!! Let us know when the package arrives and keep informing us of his status!!! Lots of love coming your way!!!
    Atyka Ditto

    Liked by 1 person

  2. Margaret Brammall says:

    So pleased Seth is better than you expected him to be Leanne I pray that tomorrow this will continue. I think of Seth all through the day and will be glad when the 1st of May arrives..lots of love and kisses to you Seth keep smiling little soldier . I look forward to your post tomorrow . Hope your daddy is ok too .xxxxxxxxxx


  3. Mitchy (Michelle) Leinen says:

    Just saw the update come into my email and had to run to my computer. I went out and bought “our” shirts for Friday. Just glad he still has smiles coming from that little face. My husband to whom I give daily “Seth” updates, is now just as in love with “the man” as I am and praying just as hard. T minus 3. WOW is this coming up fast!! Love and prayers from South Dakota!!! Tell Seth we watched “Paw Patrol” on Nickelodeon for the first time last night!! I give it thumbs up!!!


  4. Ann Marie Casey says:

    I love reading your daily posts. Your family are in my thoughts and prayers. I pray this transplant helps Seth get better. God bless from the Casey family in Tucson, Arizona!!!


  5. Lesley says:

    Love reading these updates and once again hoping with every fibre of my being that the next few weeks are good for Seth. Love the photos!!!! 💛💛💛


  6. Delphi says:

    Seth gets cuter every day – that Superhero costume!?!? Omg – adorable! We pray for Seth every night and my husband and I truly appreciate your daily updates! I really don’t know how you manage it…!!! But thank you sooo much for all your reports – we know you don’t have to do all this, and the effort it must take must be enormous! Prayers to you and your hubbie and Seth and Hugo and all your family. 🙂 ❤


  7. he' says:

    Praying in SC and praising God that Seth is better, especially of the virus. He’s an amazing little guy with obviously amazing parents. Praying for your health, too, as well as little Hugo during these stressful days. Your updates are so thorough and I am humbled to be on this journey with you. Lifting you up! Sandy


  8. Missy Washburn says:

    Love the super hero! And it is totally fitting for your little man 😊 thank you for the update and we send prayers for a very peaceful night and day to come. Hugs from Memphis, Tennessee 👍


  9. Miguel Martinez says:

    Happy to read that things are going ok, of course always taking it day by day. Your effort is so great, indeed it makes us all to learn a very good life lesson. These days staying at hospital too with my daughter but just for a bronchiolitis that is finishing in a couple of days. In a very far way starting to understand how must it be to stay for a so long time in a hospita nevertheless the illnesses are very far away too. Huge hugs from Spain.


  10. elmo hanning says:

    Ya this is a big fan of Seth I need to tell the family about a website called where the family can make a wish to have Seth meet the paw portal in person and the family can tell them wat he have. He will be so happy if that happen. Thanks Seth biggest fan Laura


  11. Jyotsna Wase says:

    I SO wish I was there in person to see Seth play. My boyfriend and I have seen Seth’s guitar video atleast a couple of hundreds of times. Atleast. 🙂 And I agree with Delphi. Seth is indeed getting cuter by the day 🙂 🙂 🙂

    Liked by 1 person

  12. angelkhandra says:

    I was gone all day and was just able to check on your update. I was thinking about Seth and your family all day! I am so taken by your little boy – he is quite the superhero. All I want right now is for him to get better and get on with his life and be the amazing little boy he is! I am moved to tears every time I tell someone about his story. I LOVE seeing the pictures of him so happy! I wish I could give you all hugs!

    Love from Kari (and Kimo the dog) in Minnesota


  13. Heather says:

    Love the pictures! I just can’t get enough of that smile I just want to hug him. happy to hear thing are improving and hope they continue to improve over the next few weeks. Thanks for the updates can’t wait for friday! Lots of love and prayers to you and your family. Keep smiling seth god has big plans for you. Tucker family cheyenne wyoming U.S.A


  14. Frank says:

    Praying for Seth everyday! My family and I sent him a yellow minion hat that was delivered today to his ward. Please let me know if you’ve received it. We love Seth and hope this can brighten his day! He is so inspiring and adorable!


  15. Phoebe says:

    Ahh! His smile is the brightest! Soooo cute so adorable! Such an amazing strong little boy, Seth’s ability to smile despite everything else he’s going through always makes me wanna cry. He’s kind of my rock now, whenever things aren’t going very well for me, I always think of Seth. A reminder to always be grateful and stay positive. If Seth can do it, so can I. Stay strong little guy, and to you and Nik and baby Hugo as well.


  16. Kari says:

    Thinking of and praying for little Seth and you guys every day! God is a big God, and is much bigger than Seth’s sickness. Warm thoughts and prayers your way from Washington, D.C.
    -Kari in D.C.


  17. toby says:

    The superhero PIC is super cool, I keep saying it Seth n I will keep saying it, you are a super cool kid who is a true battler….. Super Seth


  18. Meg McCrae Craig says:

    Hi Seth, I’ve been told that you are super at colouring in Paw Patrol pictures so can I please, please ask you to email me one that you have already done so that I can put it in a frame and hang it up beside other drawings and colouring in pictures I’ve been given.
    I hope everything goes super well for you on Friday and I will send you a wee picture of myself with Bertha (my gnome) wearing yellow. The weather over here in Scotland hasn’t been nice at all the last few days, still getting snow and icy winds here, but hopefully it will be nice on Friday so that I can send you a nice sunny picture. Lots of love and hugs Seth and looking forward to seeing your gorgeous smile again after you’ve had your new bone marrow.
    🐶 🐹 🐯 🐼 🐷 💝 🌟 🐬 🚀 ✈️ xxx.


  19. Amy Neal says:

    Ahhhhh… just seen the pic of Seth in his cape – he looks super cute!! I hope it has managed to bring even just a little bit of happiness in to his life. Thinking of you all today and hoping it goes well xxx


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