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Today – T-4

T-4…really?! Already…. it feels like i have been waiting for this for years. When actually we have only been back in hospital since 26th Jan, although wow that’s 3 months already!!

So this morning arrived and Seth had again not spiked a temperature over night, another surprise! He received a Paw Patrol Jigsaw in the post from someone today which he thinks is brilliant. So he sat with the play specialist and did that whilst I took Nik for his GCSF injection.

Bloods today (the first number in bold is from today and the second number is from yesterday).

CRP- 90/295 – this is the infection marker for the blood. It generally works about 12-24 hours behind physical presentation (such as temperatures etc). The higher this number the more evidence of infection.

ALT – 369/224 – This is liver function so the lower the number the better.

HB – 86/88 – Seth struggles to maintain his red blood cells, he has recently been dropping 20 points per day, so a drop of 2 is excellent.

Platelets 92/73 – this is a normal drop for Seth, so hopefully this will improve now the old graft is gone.

Nik is starting to feel a bit sore and achy with the injections already. It is like flu symptoms with an ache in your bones. Its nothing incredibly debilitating but is there and does have an impact. As such were changing things round a bit this week and Nik is staying at the hospital more, whereas normally he would walk back to the flat (to get some form of exercise!) in the late afternoon with Hugo to spend time playing and getting him ready for bed. During the day Nik has to work so spends time in Seth’s room looking after Seth and doing that.

Daddy having his GCSF injection to boost his bone marrow.

Daddy having his GCSF injection to boost his bone marrow.

So we spend a lot of time swapping and taking turns with each child. This means ALOT of hand washing! Which results in BMT parent arms……. O my goodness my arms feel like i have dragged them along a cheese grater and then dipped them in vinegar! The brush that you have to use to scrub each time you go off the ward is amazing – it is potentially preventing me from giving Seth an infection that could risk his life. But dear god I think i will be wandering around with skinless arms soon….but they will be the cleanest arms in all the land!

The scrubber!

The scrubber! It looks like a plastic sponge scrubbing brush. However, I am pretty sure it’s actually rows of teeny tiny swords.

BMT parent arms

BMT parent arms

BMT parent arms

BMT parent arms

Yesterday was the last dose of Treosulfan, so today he just had Fludarabine (chemo wise) and continues with he rest of the protective medication.

As the day went on Seth continued to be happy and engaged. He stayed in bed all day though and complained that he was cold. This child is NEVER cold, unless he is about to spike a temperature….. so his Nurse (who knows him very well ) and I were constantly taking his temperature and it was consistently around 36.5 – so totally acceptable and normal. I did his lunch time bath and afterwards he was shaking saying he was freezing. I dressed him and put him in bed with 3 blankets on top and he was still complaining he was cold. Something is brewing I am sure of it. But at the moment we have to wait and see what it is. He had a nap late on this afternoon and woke with a slight temperature (38.1) and did a small vomit,  but is so happy in himself and decided that Daddy needed more stickers pulling off his arms. He’s not eaten anything today but has drunk a lot of water which is an improvement.

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So as far as I am concerned something is brewing…….so we continue to take it day by day

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33 thoughts on “Today – T-4

  1. Missy Washburn says:

    Hang in! I am sure you are quite watchful these days especially! Getting our yellow ready for May 1st 😊 Thank you so much for the update while you have so much going on 👍 Hugs from Memphis, Tennessee

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  2. Brianna Wheeler says:

    We would love to send little Seth something in the mail too if it is possible. We just don’t know where to mail it too. Could you email an address to send this little angel some gifts to? Keep on fighting little guy!!!!

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  3. Mitchy (Michelle) Leinen says:

    Hopefully him being cold is from exhaustion from the chemo. Prayers will continue!! I love that we are already on t-4!!! Waiting patiently for Friday. Much love to your entire family. Especially to Nick for his body is taking a little abuse right now as well. Leanne, you are an inspiration!! Love to my little man!!!

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  4. Tricia Brennan says:

    Keep going you special boy we are all rooting for you. Wishing you and your family a continuing good result. Love and hugs from the Brennan’s in Newhaven East Sussex.

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  5. Hannah says:

    From Chicago, IL, I love reading about this brave and happy little guy. Thinking of you and praying every day for a healthy life for Seth. You are a wonderful mother.

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  6. Katy says:

    I am French and I look forward to each day your article to hear from Seth, I often think of him. Your story touches me, really, you are an incredibly strong and loving family. His smile is a true source of happiness and courage. May 1, I would have a touch of yellow on me it is safe. Seth I send you millions of kisses from France.

    (I speak very little English, I use google translator to read and write)

    Liked by 1 person

  7. David Ainsley says:

    Seth reminds me so much of Reece,and are time on the unit .stay strong Seth and mam&dad to.with a smile like yours you will beet anything .thinking of you all David&family

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  8. Kelly says:

    I’ve been praying to the Goddess everynight for seth, the family and the staff who help treat, care and protect seth and his family. He is in my thoughts and prayers. SENDING love and light…stay strong!

    Kells, USA

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  9. Atyka says:

    I sent a package through the mail for him from my 6th grade class, here in Granbury, Texas! He has letters, puzzles, colors and coloring book, all Paw Patrol and a Texas Rangers Baseball shirt! I know it’s probably to big, but we love him something BIG here in Texas!!! Best of luck, lots of prayers coming your way!! Love, Atyka Ditto Sent from my iPhone

    >

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  10. The Nardozzi's says:

    Seth shares a birthday with my little guy 2/10/10 ❤ Thank you for posting these updates-Seth is such a strong little man and we are praying for him and your family everyday. Love & Hugs from New Rochelle, NY xoxoxo. The Nardozzi Family

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  11. Heather says:

    I to check my facebook often for the days update. I love hearing about the progress your little man making . honestly I cry everytime I read them. You both are strong loving parents And you are doing a wonderful job. I can see where Seth gets is strength and courage. I love that smile. Seth you are an amazing boy keep fighting. We will be wearing yellow for you again. Sending prayers To you and your family. Tucker family cheyenne wyoming U.S.A

    Liked by 1 person

  12. Israel Galindo says:

    We are so happy to see him laugh… and we love the updates Leanne!! Thank you so much. the world is watching and wishing for the best for your lil guy and you guys as well!!! Thank you so much for keeping us updated.. and happy blessings all the way from Los Angeles! 🙂 Tell him Hi for us here!! and we are sending him warm hugs and cuddles!!!

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  13. Shannon McKnight says:

    I am Australian and have just had a bone marrow transplant with my dad being the donor this past October myself. I know how hard it can be and how you really do have to take it day by day!! I check this blog everyday to see if there are any updates on Seth and I send all the prayers and good wishes I can for Seths transplant day/continuing treatment and for you and your family!! I will be wearing touches of yellow on May 1st and thinking of you all ❤

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  14. Michael Waters says:

    Seth’s smile is contagious! Please tell him that his smile and his fighting attitude is inspirational and affecting people on the other side of the world! Stay strong Seth! God has big plans for you young man! You are in my family’s prayers daily. We are also praying for the parents that they will stay strong, positive and proud!

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  15. Maria Coles says:

    …Seth smiles as bright as the sun that shines through the day….it makes my day 😊🌸 thank you for the updates.

    We will be wearing yellow for his transplant day…moving forward & sending you distant healing with much love – you will get through this Lane family…I believe in you little man – go Seth go! 🙏xxx

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  16. linda harris says:

    Love seeing Seth smile not long now come on Seth u can do this xxx🚒🚒🚒🚒🚒🚒🚒🚒🚒🚒🚒🚒🚒🚒😘

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  17. Rita says:

    What a beautiful smile on this brave Angel. Love reading your stories and Seth’s progress. With such courageous parents, he can’t go wrong. All will be good soon. Always in our prayers, Seth. Keep smiling, you brighten my day. Love you, Seth xoxox

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  18. angelkhandra says:

    Love you, Seth! Your smile warms my heart all the way here in Minnesota! Think of all the yellow that people are sending you, and think of the sun to warm yourself, Sweetie. I’m sorry you were feeling so cold today…. Leanne – I know how hard this must be on you as a mother, watching your little boy have to suffer and knowing in your gut when “something is brewing.” Let’s hope it is something good! Love to you and Nik and your babies. Strength and Light and Healing thoughts coming your way. Your whole family is such an inspiration and Seth just lights up the world! I think about him all the time. I wish with all my heart for his healing!

    Love from Kari (and Kimo the dog) in Minnesota
    💛💛💛

    Like

  19. Jackie Lemmon says:

    Seth you are so brave. I am sick with cancer too. I’m a lot older than you and want you to know that you inspire me. If you can fight so can I! Your friend Jackie

    Like

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