New bedding sent to him. He LOVES it!!!

Today: That boy just gets more amazing…..

So my last post detailed my concerns about the return of some of Seth’s immune system (t cells). We have now spoken with Seth’s consultant who agrees with us – this graft is unstable. It is going to be better for Seth to get rid of it and start again. Even though it is dangerous the years of steroids and problems with this graft are taking its toll on his body. So its time for that graft to get out!!!

This week the plan was to remove Seth’s gallbladder because of a large gallstone that has been causing problems. This happened on Tuesday and whilst he was under he had his PEG changed to a button. The PEG is a tube going from the inside of his stomach, through the stomach wall and out of his belly that milk and medicine can be put down. Seth has a very poor appetite so we need this to help him put weight on. The button changes the tube into a shorter tube that stops at his skin. It is more hygienic and doesn’t dangle down so won’t get caught on things.

The gallbladder removal went well and they were able to do it via keyhole surgery. Afterwards he was in a lot of pain (which is always difficult to judge with Seth as he doesn’t complain, but when he tried to move he cried so we know it hurts a lot) as such he had morphine to help him manage the pain and get some sleep. The day after his surgery we were surprised at how Ok he was. He was his normal self, sore and needed a morphine bolus when we carried him to the toilet, but he was sat up in bed playing paw patrol and fireman sam. The day after however, he was very sore and did not want to sit up or move at all, he slept a lot and they had to increase his morphine. By the Friday, however, he had perked up again. He had a wound at the bottom of his belly (similar place to a c section scar) which started oozing. This made Nik and I worry as our first thought was INFECTION. However, the surgeon came to see him and was very pleased with the wound. Leaking is expected apparently because it is a high pressure wound and as long as it is dressed properly and kept clean it is fine.

Seth has now been moved into the room he will be transplanted in this room his smaller than his previous rooms (no reason – just how it is) and it has a blue line on the floor. Inside the blue line is the “clean” area. Above Seth’s bed is an air system. It pushes air down onto Seth’s bed. Vents in the corner of the room suck air out. So the air inside the line is filtered and clean. Outside the line is where the dirty air is pushed to.  So this means that he can have visitors – as long as they are well and do not enter the area within the line.

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The blue line that keeps Seth safe, and the rules of RED isolation.

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As a result of the move we are now in RED management and will be so until he has neutrophils post transplant (approximately 10 days to 3 weeks after transplant we should see him having neutrophils). At that point he will go down to PURPLE management and be allowed out (wearing a mask).

This week two other families on the ward have children that have now got neutrophils after transplant. This is brilliant You spend a lot of time on the ward and although you never meet the children, you feel like you know them. You spend a lot of time with their parents and asking after their welfare. It is brilliant to see things going well. But at the same time you have a pang of sadness wishing to be in their position. So much could happen in between now and then, we may never get there.

I had a brief conversation with Seth’s consultant on Sunday and he is very happy with Seth’s progress so far. A CT scan last week showed the infection we were worried about has gone – so what the doctors are doing so far is working. Ideally they would like to transplant tomorrow – as soon as possible. But it is not safe to do so whilst he is still healing from the operation. Chemotherapy could cause the wounds to re-open, which could be devastating. So it is a fine balance rather than best case. Were hoping he will heal well and we will be able to start chemo in 3 weeks. But that is entirely dependent on Seth’s recovery. We have had so many twists and turns over the years we take everything day by day. Never look to tomorrow – things could be entirely different and that leads to disappointment.

When it is time to transplant Nik and I have to give consent, at which time we will be told in the ins and outs of chemotherapy and the risks. We know that these will be scary. But we have no choice. We do this or we definitely lose our boy. This gives him a chance. We know that Seth has extensive damage to his lungs from the lung infection i spoke about here. Chemotherapy may cause issues here, this may be a problem, he may struggle and need assistance to breathe. We have to be ready for that. We hope it doesn’t, but we have to be prepared.

On a lighter note during this conversation we spoke about Graft Versus Host Disease, which we have been battling for 4 and a half years and lead to where we are today. Research indicates that a T cell depleted transplant carries a low risk of Graft Versus Host Disease. Seth’s chances are higher because he has had it before, but even so they are still very low.

My mum and step-dad came to visit this weekend, they spent time with Seth (only my mum was allowed to touch him as she is the 4th carer. My step-dad was allowed in the room but had to sit in the dirty area and was not allowed to touch anything.). They also took Hugo for a while so that Nik and I could be in Seth’s room at the same time – which was weird AND BRILLIANT! I really can’t wait for the day that Hugo can be there too.

New bedding sent to him. He LOVES it!!!

New bedding sent to him. He LOVES it!!!

Doing school work - learning to write

Doing school work – learning to write

Crafts! (he thinks it is fantastic that he is now allowed to use scissors)

Crafts! (he thinks it is fantastic that he is now allowed to use scissors)

Easter Eggs! All donated to the ward by kind people....Seth does not like chocolate though so........

Easter Eggs! All donated to the ward by kind people….Seth does not like chocolate though so……..

Playing with Paw Patrol pups and showing off his new hair cut!

Playing with Paw Patrol pups and showing off his new hair cut!

the certificates he is given when he has to have something done that isn't nice, or he does something that we want him to do like eat.

the certificates he is given when he has to have something done that isn’t nice, or he does something that we want him to do like eat.

We have started a timetable (awful pic because i decided to put it on the window). This really works for Seth, he loves it and at snack time he actually ate (it was one carrot - but thats the most he has eaten in weeks!)

We have started a timetable (awful pic because i decided to put it on the window). This really works for Seth, he loves it and at snack time he actually ate (it was one carrot – but thats the most he has eaten in weeks!)

After the overwhelming success of #wearyellowforseth we have started to decorate his room….

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IMG_6498 IMG_6497 IMG_6496

So that is where we are – no we wait and take each day as it comes. We wait.

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52 thoughts on “Today: That boy just gets more amazing…..

  1. Kelly says:

    What an amazing and resilient little boy. Sending love to you and your family — I cannot imagine how much it hurts to see your little sweetheart go through this — and know that you have all the positive energy in the world coming your way from Hawaii.

    Liked by 1 person

    • Victoria says:

      Thank you so much for keeping us updated!! The strength of your family is remarkable. Seth is such an amazing little boy! We are praying for him. Love from Virginia, U.S.

      Like

      • Chris Price says:

        Hi! I would love to be able to send Seth a toy or something fun….I wanted to do this before easter as a present however Im not sure my message got through (I can only begin to imagine the number of emails you must get). I have given you my work email so if you could give me a general hospital address and ward where I can send a gift I would be really grateful! All the best to you all, Chris. 🙂

        Like

      • LJLane says:

        Hi Chris. Sorry we are working our way through so you may end up with two replies! If you’d like to send to Seth Lane, Ward 3, Great North Children’s Hospital, Newcastle Upon Tyne, England, NE1 4LP

        Like

  2. Lesley says:

    I’m always checking for updates to see how Seth is doing !! Got all my fingers and toes crossed for him!!!! I really really want this to be a success!!!! Thinking of you loads little guy!!!! Keep smiling! 💛😘xxx

    Liked by 1 person

  3. Adam says:

    From Myself and everyone in the Canadian Military we are rooting for you Seth. Hope everything goes good for you and you get better as days pass. You have such a touching story and it’s hard not to cry when reading about you. Stay strong. Keep being the little trooper that you are

    Like

  4. Missy Washburn says:

    Thank you for the update! I recently began following your blog and appreciate you sharing Seth and his story. We send prayers and support from our family to yours! Outstanding pictures of your famous little guy! Hugs from Memphis, Tennessee 👍

    Like

  5. Michael knight says:

    The pictures you’ve put up from #wearyellowforseth look great !!!
    And his new bed sheets look like fun.
    Makes me wish i was about 50 years younger.

    Like

  6. Richard Clarke says:

    Does seth have some fireman sam bedding I wanted to send him some. I know he’s got some new bedding but just wanted to send him something he would enjoy too 🙂

    Like

  7. Margo says:

    I think of Seth every day and send Canadian Dancer Yellow Thumbs Up Energy his way…I absolutely am in LOVE with this little guys incredibly delightful smile and his mom and dads spirit. I am standing that Seths operations are only going one way and that soon he will not only be thumbs up in pictures but HIGH FIVING for real!! Keep it up Mom, Dad, Hugo and extended family…We are all here with you, sending nothing but love and wrapping our arms around you all.

    Like

  8. pati says:

    I hope Seth saw that on his yellow Friday I wore yellow and groomed (bathed) 27 dogs on their way to their final homes in his honor. I told them all about how he is going through a rough time and how they needed to be good at their new homes and maybe one day Seth could rescue a dog, once he gets strong and grows up. Please let him know, that I also told each of them how he loves yellow and if any needed haircuts, I did use yellow scissors.

    Like

  9. Lois Clancy says:

    Seth we are so proud of you here in Texas, your strength is AWESOME. Meghan is almost ready to post you Pictures of “Seth the show pig”. He got sick and had a rash (lol – he looked like he had the chicken pox). We find out Friday if he weighs enough to make it into the show. Haircut looks great. Keep on smiling kiddo.

    Like

  10. Miriam Hernandez says:

    I’m really stunned by how strong he is, I have 3 daughters and I started to value how healthy they are after I found Seth’s story. He is a fighter, he is a strong little angel and I’m sure he is going to grow up to be a very happy man. You are very lucky to have him as your son, my mom always says, that God only gives these types of tests to strong people because he knows they are going to pull thru them. God bless you Seth! You are a wonderful little boy. Don’t ever loose hope, take care sunshine!!

    Like

  11. Stacey says:

    Seth you gorgeous little man you. Look at that smile.. i mean seriously (everytime i see his photo pop up that smile makes my day)….. stay positive and keep shining you little warrior xo

    Like

  12. Rachel says:

    I am so glad to hear of his progress, even if it’s just small improvements day by day or week by week. I am absolutely smitten with this little man and I’ve never even met him! His face and smile brighten my heart and I only hope the best for him and your family. I love that you keep everyone updated as I love hearing how you all are doing. Keep up the good work! Be Massive! (Our citys “American Football” team motto who coincidentally sport yellow jerseys. I’m going to try and get them to send you something now that I think of it!) Positive thoughts, wishes, and tons of air kisses from Columbus, Ohio, U.S.!

    Like

  13. Michele says:

    I just read your update I am still praying for you all and I am only thinking positive thoughts for your family. Please tell Seth that even though he doesn’t know who we are this little boy has so much love surrounding him and so many people cheering for him to get better and from one mom to another you and your husband and Hugo have so many people in this world who just adore your whole family I feel like I have so much love and hope for you all. God bless your family I will be thinking of each one of you and Praying each day for health and happiness for a beautiful future.

    Like

  14. lisatagaloa says:

    Yay for the blue line and being able to have visitors! So happy to hear that there is some progress being made – I teared up when I read that Seth cried xx So much luv, hope and healing vibes comin’ at ya from my family in NZ and I’m sure it’s the same with EVERYONE aware of Seth around the world. Yours in love and light xx

    Like

  15. Seth Schwabe says:

    WAY TO GO BUDDY!!! My name is Seth also! You are so strong and have the courage of a lion! A YELLOW LION! Keep smiling and enjoying every day! I keep you in my thoughts and prayers here in Los Angeles! Your smile lights up the WHOLE WORLD pal! Keep chuggin along buddy!!! Many prayers and good thoughts going your way!!!

    Like

  16. Josephine says:

    Hi L, I guess u and Nik must b exhausting. But keep fighting, seth will get well, he is a very special one, see how people support him it shows. Plz , never give up. He is a fighter too! Love u all! Pray for u all!

    Like

  17. Jyotsna Wase says:

    Thank you, Leanne. Thank you very much for bringing this wonderful WONDERFUL boy into our lives. Thank you for sharing his pictures. Thank you for updating us all. Thank you. To both, you an Nik. Thank you. Can’t wait to see him play his GUITAAAR back home!

    Like

  18. Brian Frisby says:

    Hi Leanne – thanks for taking the time to do the update, it’s really good to hear how things are going day to day.

    You are all doing amazingly well – it can’t be easy (understatement!) but you stay positive. As always if there’s anything we can do, just ask.

    Stay strong.

    Brian

    Sent from my iPhone

    >

    Like

  19. Esther says:

    seth your always smiling no matter what you go through be strong my little man your doing great! Lovely to see you colouring like we used to do on skylark sending big hugs xxx

    Like

  20. Tersa Vogel says:

    I have been trying to get a response from anyone that can give me a site for Seth to receive storybooks done by students on a podcast. The students are from Iowa Falls Alden High School in Iowa Falls, IA. If there is a site that we can send these to please let me know. We are excited for Seth to listen to the stories.

    Like

  21. chrystaangela says:

    I feel this very strong connection with Seth; like a little brother. Whenever I see his cute little face, it really brightens up my day. His smile is contagious! 🙂 Stay strong and positive, little boy! Sending out our prayers for you x

    Like

  22. Mitchy (Michelle) Leinen says:

    You are amazing parents. Your little guy wouldn’t be demonstrating the wonderful attitude that he has if he didn’t know how much you and your husband and family and the world love him. I realize things can turn and do a big 180 in a matter of hours, but please know we(the world!!)love your family. May God’s Grace shine upon your family everyday. I Love you little man!!! Thank you for the pics. Every time he smiles, my heart melts and I cry so hard. I was blessed by the Lord with a beautiful, healthy baby boy 21 years ago!! I often wonder if I would have had the strength to go through what your family is going through had my Eli had the issues that beautiful little Seth has. Keep smiling Lanes!!!

    Like

  23. Bia says:

    Hi Sam and Seth’s parent!
    I’m Bia from Budapest, Hungary. I’m praying for you everyday. Your story is heartbreaking and first I saw your video I cried. You are going through so many things and ,besides them you are happy and strong. I think that not the popstars or politicians should be idols but YOU.
    I hope that you will be better soon!!!
    Many hugs and love from Hungary ❤

    Like

  24. Swenja Klippel says:

    This great guy and his story touches me so deeply. Every day I’m checking out the blog / #WearYellowForSeth and tears just coming up my face.
    For me he is the most amazing boy i ever read about. And his smile ( he still smiles! ) is like a sunshine for the whole day.
    He is just amazing!!! And you, the family, too!
    Again lots of strength and love from Germany.
    Fingers are crossed!!!

    Like

  25. Marvia says:

    Hey Seth 💛 I’m so glad that lung infection went away ! You are sooooo brave. I think and talk about you every single day.i believe in miracles and i know that you are one. I ask God everyday to keep you save and strong and to make you a good man. I know that you will succed, i believe it in my heart. Keep strong love of mine.
    Andy says hi 😊

    Like

  26. diesel says:

    My name is Elana Diestel I live in Maryland, USA. I don’t know why my name is coming up as diesel. I Am setting up a blog and that might be the start of its title!

    Like

  27. kathvitmar says:

    I really admire the parents of this little boy, now I know where his strength came from. It’s from the genes! Seth is so awesome, so strong and so full of hope. I know he can make it. Sending all my love and prayers for Seth. God bless him and the family.

    Like

  28. Adriana López says:

    My best wishes to Seth

    El Miércoles, 8 de abril, 2015 17:25:49, ourlittlehero escribió:

    #yiv0064513831 a:hover {color:red;}#yiv0064513831 a {text-decoration:none;color:#0088cc;}#yiv0064513831 a.yiv0064513831primaryactionlink:link, #yiv0064513831 a.yiv0064513831primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv0064513831 a.yiv0064513831primaryactionlink:hover, #yiv0064513831 a.yiv0064513831primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv0064513831 WordPress.com | LJLane posted: “So my last post detailed my concerns about the return of some of Seth’s immune system (t cells). We have now spoken with Seth’s consultant who agrees with us – this graft is unstable. It is going to be better for Seth to get rid of it and start again. Eve” | |

    Like

  29. rb2 (@_Rb2) says:

    An amazing little boy. Read up to date with Seth’s progress and what a dude. Hi5 to him and to you (his family). Must be so difficult to juggle Seth being in hospital, a new baby and also a healthy marriage. Hats off to you all. Will try and draw Seth a special Paw Patrol picture and send it into him (I might even include a new special character 🙂 )

    Like

  30. Jennifer Stine says:

    Kids like Seth are why I volunteer for St. Baldrick’s. It’s a children’s cancer fundraising charity here in America. I got to this page from another site. It asked how to beat nature deprivation. I don’t know anything about where you are, but I thought maybe having bird feeders outside would be enjoyable.

    Like

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