Today: T-6

So another 24 hours have gone by and man have they been busy! I feel like time is flying, which may not be a bad thing as I just want to get through this now.

So today is Saturday, 6 days before transplant and day 2 of chemo. Seth had another busy night with 3 or 4 vomits and a pretty constant temperature of 39+, this continued today and his top recorded temperature at 5pm was 40.

His bloods today are reflecting his presentation. The infection marker in his blood (CRP) has increased to over 300, but although his liver function has gone up it is around 370 where as last week it was over 600 so hopefully that will stay down (absolute best would be for it to come down further)

In himself Seth is ok, when I arrived to take over from Nik this morning he was in a good mood and asked to play on the floor, however, within a few minutes he just wanted to sit and watch me play (and give me instructions on how to do it right!). I gave him his second bath of the day at lunch time and after that he was saying he was cold and was shaking quite a lot despite being dressed and wrapped in a blanket. At the time his temperature was reasonable at 37-38, but we know that he gets cold before he spikes and 30 minutes later his temperature was 39.6. He had already been given the maximum dose of paracetamol for that 24 hour period so once again he had an alternative drug, but this time it did not really perk him up or help him sleep.

The doctor this morning was concerned he could hear something on Seth’s chest, but an X-ray showed no changes from the last x-ray he had a few weeks ago. However, x-rays work behind what is actually happening so we still need to monitor it.

Seth is also complaining that his Mic-Key Button is hurting. We noticed yesterday it was looking a little yellow round the edges, and today it seems to be oozing a little so we have asked the staff to clean it regularly and a swab has been taken to see if there is an infection.

This afternoon Nik and I swapped again for a couple of hours. It sometimes feels like you are living two separate lives. On the one hand you spend your day caring for Seth and living in a medical environment, and then you’re playing with a happy developing healthy 6 month old who has no clue about what is going on around him. We try to take Hugo out and about as much as we can as it is not fair for him to spend all his time in the hospital. So this afternoon as his swimming lesson. Doing this with Hugo is bitter-sweet really. You feel bad for doing things like this when Seth is in hospital. But you can’t be with Seth all the time because his dad needs to spend time with him to. Also Hugo is now 6 months old, Seth was in intensive care at 6 months old. It is so different being with a baby who has not got health problems at this age. I only realised this recently when I was digging out 6-9 months clothes for Hugo. I couldn’t understand why we had only kept Seth’s sleep suits, then i realised, Seth did not need clothes at this age.

I digress anyway! Seth started his second day of chemo which meant that in addition to the Treosulfan he began his second chemo drug Fludarabine. Yesterday was the last day of the buffy coat (temporary neutrophils) so he is now without any protection and the Human Herpes Virus 6 has its best opportunity to thrive. He is on 2 anti viral medications in a bid to control the virus and we just have to wait and see if that is going to work.

This evening I again swapped with Nik and Seth was still the same, pretty lethargic but chatting and having high temperatures. I gave him his bed time bath and did all his cares, after her perked up all of a sudden and started chatting and wanting to sit up. He was making jokes about Ice Age being on the television and it being magic because I had not put the DVD in. Then it was my turn to come back out and take Hugo to put him to bed. Its hard leaving when he had just perked up but at least he was feeling better, and I have just spoken to him on FaceTime where he was beating Daddy up and his temperature is now down to 37 for the first time today. At least he is having a break!!!!!

So we continue to take it day by day

I would also like to take a moment to mention the nursing staff on the ward. At the moment they are short of staff, but not one of Seth medicines was late and we were never left with a machine beeping for ages before someone came to resolve it. I have noticed how well this ward works and how happy the staff are, which works as they help each other out and work together as a team. Despite them being under so much pressure working in an environment with not enough staff and incredibly vulnerable patients they are continually positive and Seth loves them all which helps him.

On 1st May (transplant day) Seth’s family and I will be once again wearing yellow for our little hero. A number of people have already said they are going to wear yellow, if you would like to join us then we would love to see, but we did not want to formally ask again as people have already given so much support to us. THANK YOU.

End of the day Selfie with Marshall and Rubble

End of the day Selfie with Marshall and Rubble

32 thoughts on “Today: T-6

  1. sara says:

    Love you seth and family! Can’t wait to wear yellow again on the 1st your always in our hearts over here in Washington State.


  2. Angela Ruthven says:

    Always popping into my thoughts, Seth you ate truely remarkable! X

    Sending you lots of love & positivity via the airwaves, I will definitely be wearing yellow again for you. 💛


  3. Gillian says:

    We,ll definitely be wearing yellow on the 1st May. Your all remarkable people / family xx your always in our thoughts xxx love you all xx


  4. sarah varcoe says:

    I struggle to imagine even a small part of what you are all going through, amazingly you seem positive, and I don’t think I have seen a picture of the handsome young Seth without a smile. My thoughts are with you all and I will be wearing yellow again on the 1st for Seth. Sending massive love and positive thoughts from Devon. Sarah xoxo


  5. Gemma Newman says:

    Lots & lots of love & hugs for you Seth you can do this xxx I will def me wearing yellow for you again on the 1st May !!! Be strong & I will carry on praying for you to be well & beat this xxxx


  6. GinnyNicole says:

    I always look forward to reading Seth’s updates! Keep on smiling little man! We all believe in you and send our love ❤ 🙂


  7. Caroline says:

    I’ve been praying for you seth! I know you can do it! I’ll be wearing yellow again on the first for ya kid. You are a brave and strong soul.


  8. KerryLR says:

    I have been following Seth’s story since I heard about the wear yellow for Seth event on Facebook. His video captured the hearts of me and my family instantly. I have a 2 year who is obsessed with paw patrol, we have seen every episode, have all the toys, books and stuffed animals. So they have that in common. 🙂 my son and I wore yellow for Seth, and will be happy to do it again on the 1st. Anything to make your sweet Seth smile! Sending prayers your way from Hawaii, from one paw patrol fan to another! 🙂


  9. Margaret Brammall says:

    Beautiful picture of you both nigh night and Go Bless Seth . Hope you have a good day tomorrow. Lots of love and kisses darling xxxx


  10. Michelle gourlay says:

    You are all an Inspiration to us all. I will be wearing yellow On may 1st along with my boys and we will be thinking of Seth and praying for you all

    All our love xxx


  11. Heather says:

    Will be wearing yellow May 1st!!! I pray for Seth everytime I see your posts. What courage and strength that little boy has. As a caretaker of a transplant family member myself, I commend you on your hard work to be your sons advocate. Good luck and god bless you and your family.


  12. Missy Washburn says:

    We are totally in for a yellow May 1st for such an awesome little.hero and his family! Love the picture … Your smiles are heartwarming. Hugs from Memphis, Tennessee to you all and the incredible nursing staff👍


  13. Campbell Family Cindy , Lee, and Jeremiah says:

    We pry for you every day Seth , I wish there was a way I could help . I read your moms post every chance I get hoping to see you are better . My heart goes out to you and your family because I know that this has to be hard for everyone and even more so for you ! God bless you all and we will continue to pry for you , just like you I will never give up !!🙏❤️


  14. Nikkie says:

    Yay I found 2 yellow shirts so I can ware yellow. I did find a yellow shirt last time (so I sent in a pic of my baby waring his yellow bib) so hopefully I can make up for it.


  15. Marvia says:

    I keep running every single day for Seth and for all those who can’t. This is the best way for me to somehow connect to God and to beg him to healed Seth. Sometimes my legs hurt or i am extremely tired but i get up and i run for a few miles. I promised God that i will run everyday until Seth gets his transplant. when i’m running i always ask him to take my strength and give it to Seth. I tell God everyday that i know that Seth, Aksel(which is a kid that needs a match from my community) and my nephew Andy (which had a transplant but his own cells ate the donors cell) are going to be great men, i ask God to give them the chance to grow and to become amazing persons.


  16. Marshall says:

    I’m sure there are going to be a few ups and downs the next few weeks but Seth has a lot of positive energy going his way. I tell everyone where I work about the up dates. We all missed the wear yellow for Seth last time so we will definitely be wearing yellow this time.


  17. lindsay says:

    Seth you are a true inspiration to all of us. I do not know you or your family but my family will be praying for your healng. We will wear yellow on May 1st for you. Stay strong buddy!! 💪💖👍


  18. lesliesantos says:

    Seth, I am praying healing, protection and comfort for you daily and constantly for you, your Mummy, Dad, and Hugo. You and your family are an inspiration of love. Thank you for your beautiful pictures. I have never had yellow clothes before I knew of you. It’s a beautiful color and I wear it in honor of you! Much love to you.


  19. Megan Condit says:

    You are so strong Seth!!! Strongest lil guy ive ever seen ♡ I’ll be wearing yellow for you Seth! Your all in my thoughts and prayers ♡


  20. lisatagaloa says:

    My heart melts every time I come here 🙂 Thank goodness for the amazing staff you guys are surrounded with – having positive, “on to it” people around you must be a weight off your shoulders. And those “6month revelations” with Hugo – can’t imagine what that must be like. As they say here in NZ: Kia Kaha! Keep being strong! Big mama luvs and healing vibes xx

    Liked by 1 person

  21. Roxana says:

    Keep strong little man. I’ve been thinking about you since I heard about your story on Facebook. Lots of love from Peru xx


  22. Hayley says:

    We will be wearing yellow on the 1st.
    Lovely to point out the wonderful nurses . You and Nik are doing an amazing job too. You’ve been through so much.
    Lots of love
    Hayley Richard and Fee

    Liked by 1 person

  23. Bev in Preston says:

    I’ll be wearing yellow for Seth on May 1st. Keep smiling and stay strong little one. Wishing you strength and sending a virtual hug.
    My thoughts are with you all this week, Nik Leanne and Hugo.


  24. Caroline Nava says:

    Hi Seth,
    March 27 is already far but we do not forget you! You touched our hearts in such a way that it is impossible. I always look forward to read your mom’s updates and love follow you day by day!
    The battle you’re going through is incredibly difficult, for everyone, but hang on and be strong because YOU CAN DO IT! I am sure that’s why you were born with this fantastic weapon which is positivism.
    Since I know your story, I think of you every day and I send you healing energy. I start Reïki courses thinking of you 🙂
    This morning I woke up with a feeling of joy. I dreamed of you young adult, speaking to a large assembly. Telling what you had experienced as a child and how you won your fight and recovered. You were healthy and shinning…
    I wore yellow for Seth and I ‘ll do it again with great pleasure on 1 May.
    Love from Belgium


  25. Lesley says:

    Love reading the updates – have everything crossed that he gets through this —- I’m going to be thinking of him loads this week…. 💛💛💛👍. He’s a wee trooper!!


  26. Cherry says:

    Hi lil Seth,,

    I have came across your stories today.. At first i would want you to know that you are the cutest kid.. 🙂 Also i would like you to know that m highly amused to know how incredibly brave lil kid you are…you are the strongest guy !!! 🙂

    I really really wish u get better sooner… All our prayers are with you baby.. We all know you can make it through this..Stay strong kid !!! :-*

    Lots of love to you from India.. 🙂


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