Today: T-1

The day before transplant and Nik’s has been to the Freeman Hospital to have his bone marrow cells harvested. This meant that Nik was hooked up to a machine for about 3 hours. The machine took out his blood, then separated out what it needed, and put the blood and unwanted parts back into Nik. Wowzers!!! It’s come along way from poking a needle through the bone! Doing it this way actually results in more cells being harvested. As soon as Nik came off the machine he felt much better, the pain and flu-like symptoms of the last 5 days have gone now he is not carrying increased bone marrow cells. Nik’s main complaint was that he could not eat the chocolate biscuits I had sent him with because it occluded the machine…… such a shame!

Nik Strapped to the machine

Nik Strapped to the machine

The machine

The machine

ready to transport to the lab for manipulation

ready to transport to the lab for manipulation

Looking good Nicholas.... ;P

Looking good Nicholas…. ;P

IMG_0004_2

IMG_0009_2 IMG_0011_2 IMG_0013_2 IMG_0014_2 IMG_0015_2 IMG_0016_2

Seth has had no vomits today and so far no temperatures. The doctors are concerned about the effect of the drugs he is having on his kidneys and liver, and concerned about fluid retention. So he had an ultrasound which, thankfully, showed no changes, fluid or infection. Seth is feeling unwell and so got upset when he had to have the ultrasound. He was crying, but when she went over his lower abdomen he started saying “ouch that hurts”. She said that every looked fine, so we think his skin is even more sensitive where he had his gallbladder out due to the scar and the chemo. As he was having the ultra sound all of a sudden i thought, they are going to tell me he is in kidney failure, I need to prepare myself for this. It is a total defence mechanism, because i guess at the moment, they might say that to me one day. But thankfully…..not today.

Today he has been in pain in his shoulder and left side and this seems to have been causing him breathing difficulties and a high heart rate. He has been asleep most of the day exhausted. He did not want to talk to anyone or be bothered, which when you are in pain and have been feeling rubbish for a few days I think is fair enough! He was dealing with it more admirably than I would anyway!

As such he is now being given morphine, and can have bolus’ if needed. Within half an hour of having this Seth perked up clearly happier now the pain is being managed. He stood up shortly after the morphine kicked in and shook his arm about declaring “Look Mummy! My shoulder is better!”. Nothing like a bit of pain relief to make things easier! After that he spent time playing with his fire engines and paw patrol toys and did some colouring. He got tired quickly but again I think that is acceptable considering the circumstances!!!

No matter what happens Seth continues to humble me with his strength and positive attitude. He has rough times, as I am sure he feels pretty pants. But the moment he feels a bit better he grabs it with both hands and makes the most of it. I could not feel more privileged than being able to say I am Seth’s mummy.

Seth asked about Daddy a few times today, he understood that Daddy was going to have the magic removed so that Seth could have it tomorrow and told me that before he could have it the Nurses needed to clean it. That is a close enough understanding for me! We had a conversation about Daddy’s magic needing to find a home inside Seth so it might not make him better straight away, and that the medicine that has been making him feel poorly this week might make him feel more poorly over the next week. I am not sure how much he understood that but he mentioned later that he won’t get better straight away. So hopefully he understands enough.

So as the day comes to and end, Seth’s pain is managed and he is happier. its transplant tomorrow. Lets just get it in…. we still have a long way to go and its day by day which has been proven this week where we have had something different to deal with every day. But for now, its OK.

Advertisements

36 thoughts on “Today: T-1

  1. Lesley says:

    It amazes me what medical science and doctors and nurses can do !!!! Lets hope the magic works 💛💛xxx thinking of you little guy!!!! X

    Like

  2. Missy Washburn says:

    Your little hero is amazing as are you and your husband! We are all sending love, support and prayers your way! May 1st is just hours away 😊 blessings and wishes to all! Hugs from Memphis, Tennessee 👍

    Like

  3. Mitchy (Michelle) Leinen says:

    Thank Heavens for the pain meds. Anything that can help our guy through this and not hurt him in the long of it, well hallelujah!!! I don’t think I will be able to sleep a wink tonight because all I will be doing is thinking about tomorrow. My yellow is folded and ready to be worn tomorrow. Nick, you are a hero too!! Leanne, you are amazing. Seth, well the only word I have for you is BLESSING!!!! Hugs for Hugo and one last thing, LANES you’ve got this!!!!!!

    Liked by 1 person

  4. Linda. Valenzano says:

    Today….I literally got on my knees to ask God to help guide the magic for Seth. Here in Illinois we have so many tucking in a prayer for your sweet boy. May God keep you all in his loving care…and You are not alone, we are all here praying for Seth. I hope God will give you Peace. Sincerely,
    The Valenzano Family

    Liked by 1 person

  5. Lacy Overton says:

    I just want to wish you all the best…Seth seems very strong & I know he’ll pull through this…good luck with the transplant!….

    Like

  6. Gary says:

    All I’ll think about tomorrow is that wee boy of yours and what he’s going through. You know every morning I look at his wee face and it sets me up for the day x. I I have absolutely no doubt that many people, across the world will have Seth on their minds tomorrow. Please keep us updated x
    hope hubby has recovered too x x

    Like

  7. Brittany Taylor says:

    I just went through this with my daughter in February. I completely understand what this procedure is like because I was the donor for my daughter. I wish you all peace and a speedy recovery. Seth is an amazing little guy with such an amazing attidute toward all of the medical stuff. I am praying for you all the way from California! Best wishes for you all!

    Like

  8. Melissa says:

    I have been following this heartwarming story all the way over in Las Vegas and I will be sleeping in yellow tonight and wearing yellow tomorrow while I keep Seth and your family in my prayers.

    Like

  9. Posh says:

    “He has rough times, as I am sure he feels pretty pants. But the moment he feels a bit better he grabs it with both hands and makes the most of it.”

    Your little man is a inspiration … Our whole family will be praying for Seth’s speedy recovery. I have our Yellow outfits ready for tomorrow. Sending all our magic to you Seth

    Like

  10. lesliesantos says:

    Leanne you are amazing, your husband’s amazing and definitely your little hero is amazing. How humbling it is to see such incredible strength from all of you. Our family has been praying for Seth daily and I am waking up at night praying for him just constantly. We are with you in prayers for today,tomorrow and the hard days following. Thank you again for sharing the journey and for allowing us to have an opportunity to be about something bigger than ourselves. We love and support you all. Wearing our yellow for our little hero tomorrow. And sending hugs to you from sunny California.
    The Santos Family

    Like

  11. angelkhandra says:

    Every second of the day I am thinking about Seth and your family and all I want is for this to work and for Seth to be well and for everyone to live a happy and healthy and long and loving life! You are well on the way! At what time has the transplant been scheduled? I will be hoping and praying that all goes well and I will be thinking of Seth and your family tomorrow. I am six hours behind you, I believe, so Seth may already be getting his magic by the time I wake in the morning! I saw so many signs yesterday that I now can’t determine if they were from my son or if I am getting some kind of reassurance form the universe that Seth will be okay – I had asked my son, Morgan, to send me yellow feathers before he passed to let me know he is okay, so anything yellow reminds me of him! I think this is what drew me to Seth’s story – his love of yellow and somehow he just reminds me of my son! I saw yellow smiley faces in three different random places yesterday and I thought of my son and I thought of Seth. I also saw a crystal hummingbird hanging off the mirror in someone’s car and the beautiful golden setting sun was behind it, turning the wings golden! And there were yellow feather clouds last evening, as well.

    Seth, you are truly a blessing in this world! I feel privileged to be a witness – albeit from afar – to your courageous story. I am rooting for you, Seth, with all my heart and soul! You can do this! Hang in there and let the magic find a lovely new home in you. Your daddy is a hero for sharing his wonderful magic with you! Love to you and your wonderful family, Seth! Hang in there and know that you are SO LOVED! I will carry your beautiful, sunshiny smile in my heart all day tomorrow!

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

    Like

  12. Swenja Klippel says:

    I will wear yellow tomorrow!

    Wish you strength and faith for day 0.
    And hope that this will lead the right direction.

    Good luck and much of love,
    Swenja.

    Like

  13. Margaret Brammall says:

    We in Sheffield will all be thinking of Seth and praying that everything will go to plan .Leanne and Nik you are amazing and fantastic parents both Seth and Hugo are so lucky to have both of you as their Mummy and Daddy ..stay as positive as you can . Love to you all and look forward to your next post. Big hugs and kisses to you Seth Lane xxxxxxxxx

    Like

  14. debbie says:

    I am praying for your family so hard. I’ve come to care about Seth very much! God bless you for all your strength. He is so lucky to have you for a mum!

    Like

  15. Sílvia Graell says:

    Good Evening. My name is Sílvia. I’m from Barcelona. My son Cassià has a SCID, too. So I know your feeling. He is ok right now but we have lived a really complicated moments.
    Just continue being a proud mummy, because our kids are strong and they fight like animals.
    I will read the blog, and I will think of you and your family. If you need to speak or anything else I’ll be there. Cassià sends a big kiss to Seth. Big hugs, as you said: day by day.

    Like

  16. Tracy Turnbull says:

    Hi, I’ve been reading all about your gorgeous brave boy Seth, he is an inspiration to you all, wishing you all the luck in the world. I remember the feeling the day before transplant, so big hugs to you all, Seth is in great hands amazing staff. Sending our love to you all. The Turnbulls. xx

    Like

  17. Ashleigh says:

    Well done to Nik on that machine. Just looking at it makes me feel scared.
    Good luck for tomorrow Seth,
    I Will be wearing yellow and thinking of you. Looking forward to the blog tomorrow!

    From Ashleigh. Xxx

    Like

  18. toby says:

    good luck for tomorrow Seth and family…. I pray to god that everything will go sweet and hope we all will be reading good things on here tomorrow

    Like

  19. Richard Clarke says:

    I admire how much you keep us updated. We have all grown so found of Seth and his amazing family. I really wish you all the best of luck tmrw and I am pretty sure Seth is ready to give a big push to freedom.

    God bless you all. I have filled up every time I have read your blogs. To see a little boy so obviously in discomfort and pain to continue smiling just goes to show you cannot beat the love and closeness of a family.

    XxX

    Liked by 1 person

  20. Michele says:

    Hi Seth I will be wearing yellow tomorrow for your big day I will be praying for you and thinking of you. Get well little man the world is waiting to see you get healthy and happy 😜🚕🔶📦🏆🍋🍌🌽☀👕💛 lots of yellow for you.

    Like

  21. Michele says:

    Hi Seth I will be wearing yellow tomorrow for your big day I will be praying for you and thinking of you. Get well little man the world is waiting to see you get healthy and happy 😜🚕🔶📦🏆🍋🍌🌽☀💛 lots of yellow for you.

    Like

  22. Caroline says:

    Sending positive thoughts your way, Seth. I hope you’re feeling better soon.

    You have inspired me to join the bone marrow donor list in my country. Maybe one day I can help people as brave as you.

    Much love.

    Like

  23. Kathy says:

    My little guy Seth , I pray for you everyday little guy, be strong daddy giving everything he can, you will get thru this.
    Send our love all the way from California.
    Mom and Dad your awesome sending my love , Kathy

    Like

  24. Meg McCrae Craig says:

    1st of May in Scotland now and you’ll be in my thoughts many times today. I pray everything goes really well and I’ll be wearing yellow today too.
    Love and best wishes to all the family. xxx

    Like

  25. Amy says:

    You are all so brave and amazing. Seth, thank you for showing us how to live life and to believe in magic again. There are so many people sending you a little something extra to add to your magic that I think it will have no choice but to stick. Fireman Sam has to wish he had you on his crew too. We’ll be in yellow tomorrow sending love and a little extra magic from Chicago,USA.

    Like

  26. Christina says:

    Praying from New York for you Seth. May God be with you and your family. I hope he makes each and every day as bright as your smile.You are truly an inspiration. I’ll be wearing yellow for you tomorrow!

    Like

  27. Whitney says:

    Seth,

    What an amazing boy you are. I can’t wait for the magic to help make you feel better. You’re truly a hero in many people’s eyes and such an inspiration to all.❤️

    Like

  28. Max says:

    my name is Max, 1998 I had LLAT, I did autologous stem cells (the same type of treatment of Seth and Nick put together), I followed through the internet blog dedicated to Seth. Best wishes from Max, Nadia and Andrea from Milan.

    Like

  29. Christine says:

    Bless all of your hearts. I will be thinking of and praying for all of you today. Sending lots of magic from Louisiana too!

    Like

  30. Jenny Outhwaite says:

    I have been reading your updates every day, such a moving story of your ongoing struggle to save your gorgeous and amazing little boy. You are both incredible parents with such courage and strength. I pray for you all today. Keep going Seth you are an inspiration to the world x x x

    Like

  31. fantra13 says:

    “But the moment he feels a bit better he grabs it with both hands and makes the most of it. I could not feel more privileged than being able to say I am Seth’s mummy”.

    My heart is broken and completely full. I am crying. Yes, you are privileged having Seth as a son but also Seth is lucky that has you as a mother. I wish you all the best from the bottom of my heart!

    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