IMG_0079_2

Today: T-5

Another day closer and this morning I had a 7.15am FaceTime chat with Seth who was bright as a button and wanted to complain that Daddy was trying to get him to go back to sleep by saying it was not morning! Unfortunately Daddy slipped up when he said Good Morning to the cleaner – Seth does not miss a trick!! Seth was also very excited to tell me that he had not had one temperature over night. He had needed Oxygen throughout the night, but other than that his presentation was great!

Bloods today also showed some improvement, better liver function and the infection marker in his blood was the same – so atlas it had not gone up!

Today Seth has been up and about playing, making fire engines out of lego, and at one point Adventure Bay (Paw Patrol) and Pontypandy (Fireman Sam) came together to stop Teenage Mutant Turtle Raphael kidnapping Dilys (off Fireman Sam).  O the drama!

Paw Patrol and Fireman Sam save the day!

Paw Patrol and Fireman Sam save the day!

Concentrating on the lego fire engine!

Concentrating on the lego fire engine!

AND this afternoon he declared “I am hungry” and ordered a bowl of macaroni cheese. We thought he would have one piece and leave the rest as he would normally. Nik said to him that for every piece of pasta he ate he could pull a sticker of his arm (Seth finds this very amusing!) – half an hour later he had finished the bowl!!!

All finished! Get those stickers Daddy!!!

All finished! Get those stickers Daddy!!!

  

So today Seth has been an entirely different child and back to his normal happy self. Who knows what will happen over the next 24 hours. But at least he has had a bit of a break from feeling rubbish today.

Pulling his pretend grumpy face because he has to have a bath!

Pulling his pretend grumpy face because he has to have a bath!

Pulling Faces with Mummy and Daddy. We both got to visit him for a short time whilst Nik's dad took Hugo for a walk.

Pulling Faces with Mummy and Daddy. We both got to visit him for a short time whilst Nik’s dad took Hugo for a walk.

Transplant wise we are continuing with the protocol and today was day 3 of Treosulfan and day 2 of Fludarabine. Today Nik started GCSF injections to make his bone marrow produce more cells in preparation for harvesting on Thursday. Feedback from Nik was that it stung a little….. I am sure he will cope!

Now the chemo has started we are doing what we can to reduce the side effects, such as bathing him 3 times a day and making sure his skin and mouth are cleaned regularly. However, the chemo will cause sickness and hair loss among other things, which are likely to start about a week after chemo has finished. I am ok with the hair loss, it is part of the programme and it will grow back. But i will miss his eyelashes! They are amazing and i don’t know if they will grow back the same!!!

IMG_0079_2

Those eyelashes!!

Those eyelashes!!

Advertisements

50 thoughts on “Today: T-5

  1. Josh Huang says:

    praying for all of you guys way from Oregon, USA. Hope that the transplant process will be a success. Hugs and kisses to your little hero, Seth.

    Like

  2. federica says:

    You all are in my thoughts and in my prayers. He is a real brave boy and you are strong… I give you a big hug from Italy!

    Like

  3. Missy Washburn says:

    What an outstanding day!!!!!! Loved all the pics 😊 and those lashes are fantastic! My son lost his hair and lashes to chemo as well and they did come back just as wonderfully long as before and his hair as soft as a newborns! Will keep marching our support and prayers from Memphis, Tennessee to you all! 👍 and hugs of course!

    Liked by 1 person

  4. Delphi says:

    We’re praying for you Seth and family- every day. Thank you so much for the updates – it’s truly appreciated. Seth is such an inspiration to us all.

    Like

  5. Ruth Ann Eide says:

    Thank you so much for your dedication in keeping us all updated. I hope it is comforting for you as well. My grandson Weston had SCID and I must tell you I had no idea and couldn’t even comprehend the medical terminology. Years later this is helping understand a little more what the syndrome was all about. God Bless!

    Like

  6. Mike and MaryBeth says:

    You are doing great Seth and so are mummy and daddy!
    We continue our prayers and hopes that the medical world, your amazing body and the great Lord all agree to make your life be at peace however that may be
    : )))
    c);) *

    Liked by 1 person

  7. Penny says:

    Your doing awesome Seth, and your smile is infectious 😊. My little boy (Dylan) and I love watching Paw Patrol and Fireman Sam, Dylan’s dad is from Wales so we make him act like Fireman Sam which is funny. I bet you had fun pulling sticker off your daddy’s arm too 😝. I hope you have a good day tomorrow as you have today… Lots of love and hugs xxx

    Like

  8. Priyadarshini Goswami says:

    I did notice his eyelashes and his wonderfully dark big eyes the first day i saw him. 🙂 they’ll come back fine. Also, i’ve been following his progress pretty closely and something keeps telling me everything will turn out beautifully okay for Seth. Love hugs and cuddles from India.

    Like

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

    Keep moving forward it’s the best thing to do . Happy to hear the Seth is making progress . God bless you all

    Like

  10. Elke says:

    My little boy is 4 and he’s always asking me about Seth.. I keep him updated from your posts .. He really wants to play with him., bless .. He also wants to know does Seth like Ninjago?
    We have everything crossed for Seth and what amazing parents he has.
    Sending lots of love and light
    Elke & Finley

    Like

  11. Ruth Silva says:

    💖you are right, those eye lashes!!! Sooooo cute! They will come back maybe even fuller. May the Lord continue to bless you and guide you. May his face continue to shine upon your beautiful family and give you peace 😘 Praying and sending you hugs! 😜

    Like

  12. mandi2262 says:

    Bless you all, especially Seth. I am so glad he has had a great day, i love keeping up on his progress although heart breaking some days, you are always so upbeat and Seth impresses me constantly with his determination. Much love and hugs to you all, with a special kiss for both Seth and Hugo xx 😘xx

    Like

  13. mandi2262 says:

    You are a remarkable family and truly an inspiration to me. Seth is amazing with the most fabulous personality and determination. Bless you all, keep strong xx 😘 xx

    Like

  14. Natalie says:

    a fantastic day! Positive for Friday, thanks so much for sharing, thinking of you all.
    natalie, michael and Finn (lavender blue) x

    Like

  15. Lesley says:

    Wow this has totally cheered me up as I hate Sunday nights with the dread of having work tomorrow and now I’m smiling!!!! Great photos and lovely seeing him smiling and having fun and eating 💛💛😃😃xx

    Like

  16. Tee says:

    Wow! I am so happy to hear Seth had a good day today. Your updates are so much appreciated as they help me with the prayer points for Seth. Be of good cheer and know that the great Physician is in charge. My prayer today is that all his treatments will yield positive and desired results and the side effects be overruled in Jesus name! I will keep praying for him. Even though there’s time difference, I hope to be praying and fasting on May 1st.
    Shout out from Texas!

    Like

  17. Elizabeth says:

    He’s the cutest thing I’ve ever seen, and those lashes! 😀 I really hope you get well soon so you can start living the life you deserve 🙂 You truly are a hero!
    Best wishes from Norway!

    Like

  18. Maria Coles says:

    Thank you for your updates Leanne it is so good to see, when I show my 4 yr old daughter your photos she says “mum that’s Seth who we buyed that Paw Patrol Cards, can we go to his birthday??” 😜

    As for those lashes, it amazes me how come boys are born with such thick long wipers for lashes??(my son is the same so jealous as I have none😑)….chemo is awful but they do grow back as good as before. 👍

    I only wish for you guys to have more days like today to give you all a little rest & a break.

    Your photos are great, as I see them as captured moments that takes my breath away….just beautiful.

    Always thinking of you all often & we here in support in spirit, mind, post & through cyberspace 😊. I pray for continued happy days like today for always 💛😍💛😊 xxxx

    Liked by 1 person

  19. Lauren says:

    Sending lots of love and warm thoughts to your incredible boy and family, from Oahu! We follow your updates closely and Seth is always in our thoughts and prayers

    Like

  20. Nancy says:

    How precious you all are. May I ask what the protocol is for nutritional support? There are many options to help you though the chemo. I am a new follower of your blog. If you want to reach out ~~ yoganncy1@gmail.com. I have done schooling in holistic health counseling and can send info your way that has supported research. Peace, and Love sent your way.

    Like

  21. Marshall says:

    Good to hear he had a good day. Seth continues to inspire us all who following his journey. Hope tomorrow is another good day and there are more adventures with paw patrol and the ninja turtles lol

    Like

  22. Ashley Ann says:

    I work as a nurse, and I always read your posts to remind myself of the family perspective of my patients. Your blog helps me to better treat the whole person. I’m pretty sure I cry every time I read a post and admire your family’s strength. Love and prayers.

    Like

  23. Raffaella says:

    Bellissimi….siete davvero bellissimi! Seth ci stai dimostrando quanto davvero vale la vita, hai tantissima forza dentro di te…sei GRANDE!!! Come dico alle mie bambine….ti MANGEREI DI BACI! Dai il gran giorno si avvicina e noi siamo li con voi!

    Like

  24. Julie says:

    Wishing Seth and yourselves the best of wishes. From Perth, Australia. I used to work on the unit when it was at the General Hospital and I know how much you will all be going through. that was 20 years ago and sure things have come s long way since then, best of luck for transplant day and the journey afterwards, will be cheering you guys on 👍😄

    Like

  25. Cristina says:

    Happy to see Seth is doing well for today. It’s nice to see him all cheered up! Such a strong baby boy he is. You have many of us cheering you on to beat this battle Seth.

    Like

  26. angelkhandra says:

    Oh, it is so good to see him having such a great day! The love you have for each other jumps out of your photos! Stay strong, Seth, and your family, too! You are loved from all over the world!

    From Kari and Kimo (the dog) in Minnesota 💛💛💛

    Like

  27. Debi Burlison says:

    Thank you Angels for giving Seth the strength and courage he needs to continue and complete his journey!!! Seth you are an amazing Earth Angel!!! Sending LOVE, PRAYERS AND LOTS AND LOTS OF FAITH!!!

    Like

  28. fulya akipek says:

    forget about any loss of hair or eye leashes what ever, all of them will come back soon. think of his smile that is with you at the time!!! your photo was wonderful:)) sending my positive energy to you once again. You are the strongest family I had ever seen!

    Like

  29. Matthew says:

    Thank you so much for the updates and I’m so glad to hear Seth had a good day. He’s such a strong little guy. I am keeping him in my thoughts here in Chicago.

    Like

  30. Mitchy (Michelle) Leinen says:

    Every day since you started the T minus countdown, I run to my computer to read your end of the day update. I slept more peacefully last night knowing that “our” guy didn’t have a temp. Those eyelashes are beyond amazing and I bet they will grow back just as beautiful!!! Seth will be beautiful no matter what. Again, thank you and God bless for all of your postings. I am looking for the “perfect” yellow to wear on Friday. My husband will be wearing it as well. Love and hugs to you all. Keep the Faith. Seth, you are the light at the end of a day!!!!!!!

    Like

  31. steven mccauley says:

    My son lorcan was in ward three last year and was also diagnosed with scids at 8 weeks old.Lorcan lost all his hair but kept his eyelashes when he had his chemo so with a bit of luck seth will keep his

    Like

  32. Hugh Steward says:

    You Are amazing parent to a truly remarkable little Boy. I hope and Pray the second transplant works for you all. Good luck Nik and Seth. Thinking of you all.

    Like

  33. Sandy Kalpakoff says:

    So so happy to hear Seth had a fun day–your little man deserves a lifetime of them! Praying for continued goodness for him.

    Like

  34. Kathy says:

    Hi Seth, It’s me again, kathy from Canada…I Love the pictures that your mom posted today…My boys love macaroni and cheese too, they would eat it everyday if they could. We still have snow over here, but it’s almost gone thank goodness. It’s been raining here for the last 4 days, I can hardly wait for a day of sunshine so I can clean up the mess outside.
    Your looking great I see, I like the picture of you and your mom and dad all sticking your tongues out, that is really funny hahahaha, it made me laugh. !!! I hope you have a FUN day today.!!! Keep Smiling that Great Smile of yours !!!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s