Today: The process has begun….

Before I really start talking about Seth’s progress I wanted to thank everyone for their kind words and support and for sharing Seth’s video. It means a lot to Seth’s dad and I. I have had a few questions about donations and the wear yellow day. I will continue to respond to all of your questions as quickly as i can,  but I thought it would be helpful to post some links here for easy reference.

First of all i would like to highlight that our aim with #wearyellowforseth is to raise awareness and show Seth he is not alone in this.

Links I have been asked to share:

http://www.bubblefoundation.org.uk.

http://gofundme.com/SupportSeth

I have also had a number of friend requests. Unfortunately I am not in a position to add them as my Facebook is my personal page. If you would like to add yourself to this event:https://www.facebook.com/pages/Wearyellowforseth/946709205361894?skip_nax_wizard=true&ref_type=pages_feed. Updates will be posted here and you can also share you yellow pics on here too!

Now to the boy in question!

This week we have been told that Nik, Seth’s dad, will be the donor. We are both an equal match. However, I carry a virus called CMV (most healthy people don’t even know they have had it or may suffer a sore throat). Which stays in your system after you’ve had it like chicken pox. About 80% of the population is assumed to carry it, but for someone like Seth it can be quite dangerous.

ATG started this week and as it will wipe the T cells and put him more at risk.

 We were allowed to take him into the interview room on the ward to be able to have a family photo. We did not have a picture of all 4 of us (other than one taken at halloween where we were all zombies covered in face paint!) and I felt like I needed to get one incase we don’t get the chance again. Some people may consider this to be pessimistic. But I consider it to be realistic. Seth is not guaranteed to get through the next 4 months. A bone marrow transplant is a dangerous risky procedure when you don’t have all the complications Seth has. Seth’s consultant has been very careful to remind us of this. So i just wanted to make sure it was done!

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not the most fabulous family photo…..but we have one!!!

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and a cheeky cuddle with his brother

I came home on mothers day as I have to have a root canal (o joy to the WORLD!) so we’d planned to do it on the Saturday. Unfortunately, it seems i have been a bit tired and run down as Saturday morning i develop a cold sore. This means I can’t have direct contact with Seth. I was allowed into the entrance part of his room to see him through the window. But he was sat crying. So i went to get nik. The doctors saw we were a bit upset so allowed me to go in and see him if i wore a face mask and was only in there briefly. So he got to give me the things he’d been making with the play specialist and have a quick cuddle.

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This last week,  Seth has remained well in himself. However, he doesn’t like things to run entirely smooth! So he started the ATG drug on Monday of this week, which kills all off the T cells which have been causing all the problems and killing his immune system (making him have less immunity than he did before the initial transplant). When having this drug it is common for people to have a response, usually a temperature spike so it is given with Piriton and hydrocortisone cover. Seth managed it fine though with no temperatures! He did has a slight temperature increase on the Thursday evening but it came back down on its own within half an hour. However, on two occasions I went to pick him up and he had a wet right armpit…just one which i found strange. The first time i had picked him up and took him of the toilet so i thought i must have had a wet hand from washing them. The second time there was no water in sight and i realised his Apheresis line must be leaking medicine.

The Apheresis line, where it is placed and how it works.

The Apheresis line, where it is placed and how it works.

This is a problem for two reasons. 1. If it has a hole or has been displaced by being pulled then it is a site where infection can get into his body. 2. It is needed for the antibiotics Seth needs to help keep him well and protect him from infection, the blood he needs as he cannot maintain his red blood cells or platelets and so they can give him neutrophils. Because they could not risk infection they had to stop losing the line immediately and do an x ray using dye through the line. This could not be done straight away. So a cannula had to be fitted. Seth hates this. They use numbing cream on the skin, but his veins are weak from years of having to have them so it always takes a few attempts to get them in. He cries so much, but never moves. He’s really so good with it. Once fitted he will not use the limb it is in. This time it was the foot (after 3 attempts in other places), so he would not walk with it in.

So far the ATG has done what it should and he has no lymphocytes (T cells or B cells). There is a chance that his own neutrophils may come back, but this would be a surprise and so far (4 days after ATG has finished he still has none. So at present he had no immunity of his own at all and is entirely reliant on the buffy coat (neutrophils given by infusion that die quickly) and the anti biotic/anti fungal/anti viral medication he is on.

All the medication that Seth is on takes it toll on his body and he now has very loose diahorrea (sorry if you’re eating!). He manages it well, getting to the toilet and he doesn’t appear to get any stomach cramps so that’s good!

Seth has been on Prednisolone IV or Oral since his original transplant in Nov 2010. (see previous blog entry here).

Seth’s getting a little bored in his room and is become more and more like a coiled spring waiting to pounce….I’m not sure how he will cope with another 3 or 4 months in here!!!

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This is the entrance to Seth’s room. Before anyone enters we have to scrub our hands and wear a gown plastic apron.

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School and Seth’s art work on the wall

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He’s asked to go home a couple of times this week, but accepts it when he’s told he can’t. He already knows but I think just likes to mention it every so often.  This week however he has discovered Teenage Mutant Ninja Turtles….so we get a break from Toy Story 3 and Paw Patrol!!!!

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172 thoughts on “Today: The process has begun….

  1. Frank D says:

    Dear Seth:
    I was seeking for the most wonderful and bravest superhero in the world.
    Then, heard about a superhero agency and contacted them.
    The superhero agency refer to you as the best superhero in world history.
    We live in a small island in the Caribbean (Puerto Rico).
    Please get well and visit us one day.
    You, the best superhero has a mission to complete!
    Best Wishes,
    Frank & family

    Like

  2. Stephanie Knapp says:

    I have only just come across Seth’s story today and am so sad i didnt know about wearing yellow today, i wish i had found out sooner. Little seth is so brave, my heart aches for him – i pray everything goes “according to plan” and the transplant will be successful. Mommy you are such a strong woman…my daughter is 14 months old now and i just cannot imagine how hard this must be for you too, seeing your baby go through all of this..i would be a complete mess if i were in the same situation. Sending lots of love, all the way from Cape Town, South Africa 🙂

    Like

  3. Morgan says:

    What an absolutely beautiful family you have. Seth, you are my hero. No one is as tough as you! You’re the coolest kid. My favorite color is also yellow. It reminds me of the sun and happy times. And now it will always remind me of you as well. I hope you feel better. And, aren’t the Ninja Turtles the best?! Cowabunga, dude! – From Louisville, Kentucky

    Like

  4. makerofdreams says:

    New photo taken today (thumbnail) of my “Wall of L.O.V.E.” for CNN iReport and for Seth Lane. Here is my posted CNN iReport. Our Little Hero – Seth Lane (attached full size of thumbnail photo with CNN iReport).

    Since I do not have Twiitter and couldn’t find Seth Lane on Facebook, I’ll go this route to share my expressions of support, L.O.V.E. & hope for 5-year old Seth Lane. I’m sharing this message with Seth from two of us – myself and my friend Michael Jackson – as we both share with Seth today the wearing of yellow in his honor! The inscription on Michael’s photograph reads, “With love And Appreciation, All my Love, Michael Jackson,” with his Wishing Star added to his signature. Beneath this is 1998 over 0 0 0 with an arrow pointing to the right. God’s Blessing & L.O.V.E. for dear little Seth.

    Rob Swinson, Neverland Valley HIStorian & Author of http://www.MakerOfDreams.com, Michael Jackson’s “Maker of Dreams”

    Liked by 1 person

  5. mamamaus says:

    You mentioned that you are hard pressed to reply to all the kind strangers who have sent Seth and your family their well wishes. Please don’t feel pressured to do that. I am sure that everyone who comments here does not expect any kind of a reply from you. We all know that your energies are needed to focus on young Seth, as well as little Hugo and the rest of your family members. So please know that those of us who are keeping up with your blog and making comments truly do not expect you to reply to each one. We just enjoy sending our warm wishes for Seth to have a successful transplant and a full recovery! The best of every thing to you from Wilmingon, North Carolina in the United States! – Jeanie S.

    Liked by 1 person

  6. Ankita Srivastava says:

    O My God! What an adorable kiddd!! 🙂 Sending lots of L.O.V.E, light, laughter, peace and healing vibrations to your beautiful family all the way from India! I’m a part of the wonderful global Michael Jackson fan community and would like to tell you that we’re all praying for Seth’s speedy recovery! ❤ With kind regards, warm hugs and gentle kisses.. ~Ankita Srivastava, India

    Like

  7. Valerie says:

    Dear Seth & his lovely family,
    First I’m a french girl then, my apologies for my bad english.
    We are following you and we really hope you will go through this.
    You’re all so brave, strong, I have so many respect…
    Stay strong, we want to continue having news and we wish you all the best, and soon the back to home, we hope for you.
    ❤ with all my love,
    Valerie, Paris, France

    Like

  8. Alison Mason says:

    Hi, I have been following Seth since March when I first heard about ‘wear yellow for Seth’. Your little boy has captured my heart as I too have a little boy called Seth who has had a bone marrow transplant for Leukaemia (ALL T-cell). Unfortunately I understand only too well all the medical terminology you are using. I started a blog in 2010 when my Seth was first diagnosed. If you are bored and want to feel like someone understands then you can read it at http://www.sethsrecoveryprogress.blogspot.com.au. Funnily enough, in another coincidence, he is known as “Superhero Seth” to everyone who has met him. We are coming up to 3 years post transplant and we are only now seeing the back end of his GVHD.
    These boys are so very strong and patient and brave. I wish you all the very best for the coming transplant. Its not an easy time and Seth will be in my prayers and thoughts daily as you travel this journey together.

    Like

  9. Avery Braun says:

    Hi Seth!
    My name is Avery and I am writing from Bismarck, North Dakota. Just reminding you that you are loved ALL over the world! I read this blog almost every single day waiting for updates. I’m always thinking positive and happy thoughts for you, Seth! and now every time I see yellow I think of you. You are such as strong and inspiring little boy! Keep being awesome! Sending prayers all the way from North Dakota. ❤

    With love,

    Avery, U.S.

    Like

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