History: Part 3 – To transplant and getting home!!!

It’s been a little while since I last posted about Seth’s history and the things that have happened up until his readmission to hospital at the beginning of February. You can read the first part here and the second part here.  So much happened during this time it is difficult to remember, but the basic over view is here – i hope!

We left off with Seth being deemed well enough to be moved from Leicester Royal Infirmary to Great Ormond Street Hospital in London. This is approximately a 3 hour drive. Because he was still on oxygen and still really quite a poorly lad we had to blue light there with two nurses in the back just incase Seth had any problems. Arriving at Great Ormond Street I was overwhelmed. This was the children’s hospital that we have all heard about (in England at least!). They fix the sickest of children. So they had a reputation to live up to. This was my first time seeing Great Ormond Street and my first time being involved with tertiary care (tertiary care means that they largely provide third-level specialist care. Primary care generally consists of frontline services such as GPs and dentists, while secondary care is offered by local hospitals. Therefore they address more specialist issues). We were on Robin ward, a ward for infectious diseases and immune deficiency. You may be thinking woah woah woah – immune compromised kiddies on the SAME ward as children with infectious disease?!?! Yes its true. But the ward is a corridor with a bunch of rooms, all with filtered air that takes out any bacteria. Prior to a patient going into a room the room is deep cleaned. The nursing staff follow strict guidelines to prevent infection between patients. So actually it makes sense that both are on such as ward as they both need isolation. Also children like Seth often carry infectious disease because of the nature of their illness.

o4132-0014479

Robin Ward at Great Ormond Street Hospital.

o4132-0014480

The ward is a corridor of rooms. As you can see in this picture the children have a large glass window to look out of.

Seth arrived at Great Ormond Street Hospital at the beginning of October 2010. Within a few days of arrival we had met Seth’s allocated Immunology Specialist Nurse, she would be his main contact throughout transplant organising his care alongside his consultant, Dr Wasim Qasim.  The first thing was to discuss donor options. They were approaching the bone marrow and stem cell registers world-wide to identify any potential matches. Within 11 days we were told there were 4 matches, each being a 100% match to Seth. The doctors decided to go with a cord transplant from a cord donated in Germany in 2006. The reason they chose this was because Seth was carrying virus’ in his stomach and chest and research had indicated that a cord transplant was more likely to be able to address these issues quicker than a donation from an adult marrow.

In addition to this we were told that because of the damage caused to Seth’s chest, and because he was carrying these virus’ chemotherapy would put his life at risk. Normally you have chemotherapy to prepare for a bone marrow transplant. The chemo empties the bone marrow of all cells and the new bone marrow goes in without there being any cells to fight.

Seth’s condition (x linked Severe Combined Immuno Difficiancy) means that he does not have any T cells (T cells are white blood cells, but the most important white blood cell as none of the other cells work without them). So as he has no working immune system and is missing “the management” he is in the best position to have a successful transplant without conditioning (chemotherapy).  However, the risk would be Graft Versus Host Disease which can cause significant complications and in some cases be unmanageable causing death.

In an ideal situation we would go for the conditioning and get rid of anything that Seth may have had in his bone marrow. But, unfortunately, we had no choice. He wouldn’t survive chemo and gene therapy at the time was new and thought to be causing leukaemia in some patients. So we agreed and plans were made.

Whilst this was happening Seth’s chest was getting stronger and he was becoming himself again. Because of the virus’ in his stomach he was nil by mouth and being given TPN (Total Parenteral Nutrition). So he was getting all the nutrients he needed, but was still hungry. He would go crazy when the nurses brought in his oral medicines and suck them out of the syringe despite them not tasting very well. He would also suck the water of the sponges we used to keep his mouth clean. It was hard to watch your baby being so hungry and you not being able to explain why he could not have food. However, as usual, Seth dealt with it and got on with thing most of the time  ( way better than i would have done – i get ANGRY when i have missed one meal never mind several!!).

As the days and weeks went by there were a few hiccups with Seth spiking a temperature and having kidney problems. This delayed the transplant on one occasion.

LostFile_JPG_35989896

Sucking the water out of a mouth cleansing sponge

Seth received his transplant on 5th November 2010. When you get to transplant your child goes into script isolation, where gowns have to be worn at all times, clothing and bedding boil washed daily, very strict hand washing, no drinking or eating in the room, everything Seth touched had to be sterile and only 3 named carers allowed in his room until he has neutrophils. Our named people were me, Seth’s dad and my mum. In the few weeks before the transplant we asked friends and family to wear yellow (like we have this time, however, it did not get so big last time!!!). This was really good for us as parents isolated from the people we know. It’s a way of making you feel like everyone is closer. I mentioned in my previous post (an aside) where the idea came from but i will re post here in case you did not see it.

An old friend of mine was also battling leukemia. She was a big supporter of Seth and spoke to me about the significance of the colour yellow in relation to immunity. Apparently is signifies a strong immune system.

LostFile_JPG_36038880

A few of the pictures we received on the previous wear yellow for Seth day 5th November 2010

LostFile_JPG_36725264

LostFile_JPG_35713864

Below – Seth and I on transplant day in our yellow tops!

LostFile_JPG_35479472

The cord had arrived frozen and was defrosted in the lab before being brought up. Seth had three bags of cells! The process is less exciting than you expect it to be. It happens very similar to how a blood transfusion happens. However, Seth was on so many medications he was attached to his line pretty much 24 hours a day.

LostFile_JPG_34949600

The new immune system going in!!!!

The actual transplant days (he had one bag of cells a day for 3 days) we uneventful. Although it came with an overwhelming smell of canned sweetcorn! The substance used to freeze the cord blood after harvest smells of sweetcorn! So as it is given to Seth he starts to smell of sweetcorn! I swear I loved sweetcorn until that! It was overpowering at times!!!!! Seth didn’t seem to mind though.

4 days after the transplant Seth grew his first 2 teeth! All of a sudden out of no where! It was quite a surprise! On the 5th day i noticed Seth flash red, his skin went a patchy red for a few seconds and then back to normal. I called the doctor as they had stated that this was a sign of Graft Versus Host Disease, but they said it would be longer before there would be any signs of it.

Following transplant it was all a bit of a blur. The days were very much the same routine. Normally volunteers and play specialists spend time with the child playing with them helping them develop, and giving them another face for an hour. Because Seth had virus’ he was not allowed such visits. So Seth and I spent all day everyday together, which wasn’t too bad actually and i was able to get out of the room when he fell asleep for a nap or in the evening. There was an intercom system that the nurses could switch on when i left so they could hear if Seth woke up. Nik, Seth’s dad had to work so during the week he would stay at home and at the weekend he would come to visit us. He would spend the nights with Seth and I would take a break and stay on the mother’s unit (accommodation for mothers provided by GOSH). Because i had been unable to leave the room all week I would often spend time during the days walking round London ( I can now navigate our great capital pretty well on foot!). This meant that Nik and I did not spend much time together. It mattered, but at the same time it didn’t, because this point in our lives wasn’t about us. It was something we had to get through. I think because we both accepted that we got through it.

After 10 days I went out as i did everyday to check Seth’s blood results and…. FANTASTIC… he had neutrophils. They were still very low, but had started to come up – this means that the transplant had worked…to some extent at least.

Also as time went by it became apparent that Seth did have Graft Versus Host Disease in his skin. So, although he was already on IV steroids (prednisolone) this dose was increased. In addition it was time for him to start eating again. As he had been nil by mouth for 4 months his stomach was extremely sensitive. He didn’t tolerate the smallest amounts of milk for the most sensitive stomach and refused to drink milk himself. So we had to feed him slowly through a pump and a NG tube (a tube from his stomach coming out of his nose). He tolerated very slow levels (5ml of milk per hour) and even his medicines if given too quickly would cause him to vomit.

Eventually he was off TPN, tolerating enough milk and was being managed on oral medication. This means the plan was home. Hurray! After 5 months and 17 days (170 days) we were going home!!!! YES!!! Although….this is Seth…. nothing runs smooth!!

5 days before we were due to go home i looked up and he was sat in his cot shaking, so much I thought it was the start of a fit. I pressed the buzzer and the nurse came in. He was spiking a temperature. His body was shaking to get itself hot. Phew, not a fit. But, a temperature, damn it so close to going home. The doctor was sure it was an infection in his Hickman line (the line that gives them access to a large vein in his neck so he can have large volumes of medicine) so they removed it and he had no more temperatures… we got to go home!!!

Going home wasn’t straight forward. Nik had to deep clean the house to make it as clean as possible for him. As although he was going home  he still needed to live in isolation for a while. So no visitors, especially no contact with children, no going out to crowded places and when out where there may be people to be in his pram with the rain cover over him.

The next step of his journey had begun though and we were home. With the boy who doctors weren’t sure he would make it out of intensive care. The next few months were all about weekly visits to GOSH (3 hour drive from home) for check ups and monitoring, and learning to live as a family again. Nearly 6 months apart is a long time.

In mid April I had to return to work as my maternity leave ended, so we had to think about what on earth we were going to with Seth. I had to work as we needed the money, and if i did not return I would have to repay my maternity pay. We were very lucky that a close friend was able to look after Seth when I had to go into the office. This made a huge difference to us as a family. 14 months later in June 2012 he was allowed to go to a local child-minder who had only a few children. This did Seth the world of good. Up until then he had only had contact with one child and as such he did not know how to interact with children. He had been  raised around adults and nurses and so children made him anxious. They are more unpredictable than adults! An adult doesn’t take a toy off you, or push you over so this was a whole new experience to Seth. He did not know how to communicate with children and so he took to being passive. If a child took a toy from him he would let them and there would be no response from him. As a parent it was difficult to see him being completely indifferent to situations like this. He did not get angry, or upset. He just sat there.

In addition to his lack of peer-to-peer social skills Seth’s development was delayed. At the age of one he was not yet crawling. At 18 months he had begun to crawl, but on all fours (like MowglI from the Jungle Book!), and did not start walking properly until he was 3 years old. He had support in trying to walk. The main reason for his struggle was that the steroids were preventing his muscles from growing properly and his ligaments were too loose making him hyper flexible. Although he now walks confidently he still cannot run or jump, and just prior to returning to hospital continued to lack confidence outside because of his lack of stability.

The graft versus host disease continued to get stronger causing extremely dry and flaky skin, inflammation and redness to the extent that his skin begin to crack and he would have sores, his lips at times were just scabs. It was not until his skin healed recently that we realised how much this affected his smile. He now has a great big smile that was not there before.

10406937_10204529497530793_120816610041113379_n

Showing the GVHD in his face and hands

LostFile_JPG_1211409248

The skin being very dry and thickening as a result of the GVHD

LostFile_JPG_1211414824

GVHD on his belly that is very distended due to steroids

1891163_10152295633255356_315475705754775583_n

Showing the GVHD in his lips, preventing him from smiling properly – but he still does it!

LostFile_JPG_1211409336

Since transplant and until January 2014 we tried to manage this with steroids, for this time he has been on a very high does of prednisolone (2mg per kilo at times) which has caused its own problems. Steroids are a necessary evil i have learned. As a result of the prolonged steroid use Seth has osteoporosis. He is very small (the size of a small 2-year-old), and has poor muscle development. The steroids reduce the effectiveness of the immune system, therefore preventing it from attacking Seth and reducing the GVHD. However, this also makes him more prone to picking up infections.

Despite this reduction of his immune system he managed quite well, although we did have hospital visits regularly (if Seth has a temperature of 37.8 or above he has to go into hospital for antibiotics and blood cultures). These hospital visits also seemed to coincide with weddings! In 2013 we had 4 weddings to visit and we only made it to one as a family, luckily that one was ours!!

Although Seth’s health has never been perfect, we have managed it along with getting him to experience things. He had missed out on so much we want him to experience what he can. He has travelled to Europe – because he cannot fly due to the extensive damaged caused to his lungs when he was in intensive care.

However, we were failing to control the GVHD and there were growing concerns about him being on steroids at a high dose for so long. They were now becoming the problem. Luckily, the Great North Children’s Hospital had begun a trial using ECP (extracorporeal photopheresis or light therapy). To have the treatment you are connected to a machine by a central line. Your blood then goes through the machine, which separates off some of your white blood cells. You then have your blood, minus the white blood cells, given back into your vein. The separated white blood cells are treated with a special drug and then exposed to ultraviolet light. This light activates the drug so that it is able to destroy the abnormal white blood cells. After this process your nurse gives back the treated white blood cells into your vein. Seth had this treatment at the Great North Children’s Hospital once a fortnight for 3 months, then once a month. Although at the time Seth’s management was at Great Ormond Street Hospital. The Great North Children’s Hospital was the only place in the country able to offer this treatment to someone Seth’s size. So once a fortnight we would travel up to Newcastle Upon Tyne (4 hour drive) and stay over night to have the treatment over two days. Seth’s skin did improve a lot, it meant that we were able to reduce his steroid from 20mg per day to 7.5 and 5mg alternate days.

This was looking BRILLIANT! Finally there might be an end in sight……….. however, in September 2014 Seth and the rest of us attended a friend’s wedding. Seth was doing amazing. For the first time ever he was confident in public like a normal boy. He got up with the band playing a toy guitar. It was amazing to see. However, at about 4am he woke up and came into our room complaining his leg was sore, we thought he had slept on it funny so allowed him to get in our bed and went back to sleep. At 7am he woke complaining it was painful again. Seth doesn’t complain. He broke his arm in 2013 (as a result of the osteoporosis) and we only knew because it was swollen and he wasn’t using it. So we knew something was wrong.

I don’t know why but i suggested deep vein thrombosis to the doctors who thought he had broken his leg. I just couldn’t see how he’d broken his bone, he had not fallen, or twisted it or anything. He had been fine. Seth was getting more and more pain in his leg which swelled to an unbelievable size. A wee man who doesn’t complain was screaming in agony when he was lifted to go to the toilet. So much so that he stopped going. Refusing to wee because it was just too painful. Eventually a ultrasound was completed and a large clot was found in his left thigh. It was a DVT. This meant that they could start him immediately on blood thinners and his leg should go down within a few days. However, when doing the CT scan and moving his leg it seemed that some of the blood clot had moved which caused Seth to have a turn. He started shaking, his temperature shot right up and he went unconscious. I felt sick, immediately i thought we were going back to intensive care. I genuinely thought that was it for him. Luckily, it wasn’t he was stabilised and then transferred from our local hospital up to Newcastle to the Great North Children’s Hospital.

For the first time ever Nik, Seth’s dad was the one going instead of me. I was 33 weeks pregnant and so not allowed to travel in the emergency ambulance with him. I have never had to watch him speed away before. I am always the one holding his hand. It was a horrible feeling not to be there for him.

That time we stayed in Newcastle for 3 weeks before returning home, luckily I stayed pregnant and had Hugo as planned in the hospital near our home. Hugo’s cord was collected at birth and frozen incase Seth would ever need another transplant. Hugo was also tested for SCID. The likelihood was that he would not have it because I am not a carrier, and he doesn’t.

In addition since August 2014 Seth has been unable to maintain his HB (red blood cell) level, so he has been having 2 to 3 blood transfusions per week, in December he also stopped maintaining his platelets (the things that make our blood clot) so he has been having transfusions of these ever two to three days. Initially it was thought that this was related to Haemolytic Anaemia (an auto immune disease were that attacks blood cells)…. however, we now know that it wasn’t this but that the Graft Versus Host Disease had begun to attack his bone marrow….leading to where we are today.

190 thoughts on “History: Part 3 – To transplant and getting home!!!

  1. Sabrina says:

    Hello Seth and family,

    Just wanted you to know that I am truly touched by your story!
    I will be wearing yellow here in Windsor, Ontario, Canada tomorrow in support of Seth.

    Good luck on your journey, there is a light at the end of the tunnel for you folks and it is very empowering to read about what a strong and enduring family yours is, you are all so lucky to have each other.

    PS Seth is such a cutie –

    xoxoxo

    Like

  2. Ian Blais says:

    We are awestruck and the power and determination the Lane family has. We hope , as family, that Seth’s numbers always fall in his favour.

    The Blais Family.
    Ottawa, Ontario, Canada

    Like

  3. Heather Phillips says:

    I had to read the heading from our local newspaper three time to be sure I was reading it right… Once I was able to wrap my mind around what I was reading the tears began. While I hate to see anyone go through this horrible disease the fact that Seth is five and still giving thise disease a run for its money, warms my heart. Thank
    you for sharing his story with us. And we will be thinking of Seth and his family on the 27th.

    Like

  4. Karen says:

    Seth has really melted my heart, he is such a courageous little boy who seems so adorable that I’d love to give him a big hug- he has the most gorgeous little smile. I really hope to read soon that Seth is back on the way 2 everything working in his favour and yours to of cause.
    You & yr husband r truly amazing & it must b why Seth is the way he is because of you. Best of luck to your little guy & tell him sending lots of love & well wishes from Australia & to keep up that great smile 💛💛💛💛💛

    Like

  5. Adnane Laaroussi says:

    You are all such a strong and amazing family. Seth is one incredible beautiful boy. I hope everything works out the way god intends it to.

    With love from my family to yours,

    Adnane

    Like

  6. Brady Tannehill says:

    Can we donate marrow to him? Something about me just wants to help him. I don’t know much about bone marrow transplants but I’d be willing to try!

    Like

  7. Ana Ramos says:

    Your son’s story has left me speechless, he is such a brave, strong little boy with a great will to live! your whole family is amazing. Seth’s fight brought tears to my eyes. I pray that all continues to improve, stay positive and strong!!

    Like

  8. Layal A. says:

    Reading your story about your little boy breaks my heart, mostly because I have a little sister around his age. I can’t imagine what you and your family have been through and I wish nothing but the best for you all and for Seth. He will fight through this, he seems like a very strong and beautiful boy. God bless you!

    Like

  9. kyla raburn says:

    This will one day be an amazing story of Gods greatness! My brother recently went through something like this. He was diagnosed with hlh which attacks the immune system just like Seths. We almost lost him but he pulled through. I know how heartbreaking it all is. Everyday is a new battle. It was an extremely long journey for us but I just want you guys to keep faith and never lose hope! A little verse that we read over and over that I know helped get us through it is Psalm 112:7, just thought I would share that with you guys! I would love to continue hearing his story and even do something for him if possible (even if it is something I can’t do in person). Im assuming that my email address is somewhere on here! I will be praying for you guys and will start a prayer chain in my church and in my town! Keep your faith and never lose hope because God is in control! Love you baby Seth!

    Like

  10. Acacia Nightingale says:

    I made a poster for Seth, with the Paw Patrol characters on it. I was wondering if I would be able to send to you guys, for him to have? If you want you can either email me or message me on my Facebook! We’re all rooting for you, Seth! #wearyellowforseth

    Like

  11. Matilde says:

    Dear Madam, I am writing to you from Italy, and I have read your history. I have a little boy who is almost 5 years old and who likes yellow color so much, as your little Seth does.I don’t think I will write many words to express all the things I would say to you; there are no words to express all that big emotion I have inside now. If I only could, I would hug you. Your strenght and gratitude for life are precious gifts you decided to share with us. That has no price. Thank you. (and sorry for my English)

    Like

  12. Susan Sambrook says:

    Leanne,
    I am 33 years old and I have SCIDS. I was born with it like Seth. My diagnosis was Omenn’s Syndrome and I am (supposedly) the oldest living survivor in the world. I was in reverse isolation for 6 months after my BMT when I was 4 months old. I still, (and have always) IVIG every 4 weeks. I have gvhd and I live a pretty normal life. I have been happily married for almost 5 years and am finishing a Master of Arts in Theology and hope to go on for Ph.d. I tell you all of this in hope to pass on HOPE smile emoticon My family and I are praying for Seth and all of you. God is a good God! Hang in there! We are rocking our yellow for Seth today. Keep smiling!!!!!

    Like

  13. Dafni says:

    I am Dafni from Greece and I recently found out about your little boy’s condition. I am so moved by his story and his strength. My thoughts are with him and I am sure that one day he will be able to do everything he is hoping to do. Congratulations for being such good parents for him. His smiles in the pictures say everything! Be strong and pass him all my love and blessings! We love you Seth

    Like

  14. Shawn buckley says:

    Hi this story touched me right to my heart I’m Shawn I’m a 24 year old in Kansas city. When I found out about the 27 and yellow I was so excited. To show the little man how much we all love him. I’m getting every person I see today to sign a yellow shirt with a message of hope n insperation. I would love to send this to Seth and his family to show him Kansas city loves him. My email is shawnbuckley@live.com please contact me. Support always! Simply smile

    Like

  15. Karina says:

    I’ll be wearing yellow this whole week. I send all my love to this amazing and precious little boy who deserves an entire life of happiness with his family. Stay strong!! greetings from Paraguay ❤❤

    Like

  16. Rhiannon says:

    I’m in awe of Seth, such a strong boy, and always has a smile on my face, it was a pleasure to wear yellow and spread his story! I wish him all the love and luck in the world, such an inspiration stay strong all of you! Seth and yourselves are truly amazing xxxx

    Like

  17. Sebastian Gonzalez says:

    Best wishes!! Sending much love and happy thoughts your way! To say your strength is inspiring would be an understatement… 🙂

    Like

  18. shannondonoho says:

    This is the first time that I have ever heard about Seth. My eyes have filled up with tears in sadness and happiness! You two have been an amazing set of parents to Seth and I’m sure that he is well aware of that. You guys are so strong and will for sure stay in my prayers! I hope all continues on a good streak! I live in Omaha, Nebraska and am amazed at how word travels! All of the best luck to you guys in this roller coaster of a journey! Keep going strong:)

    Like

  19. Molly Fokken says:

    I just read Seths story and I have got to say that you guys are an amazingly strong family. After reading this I ran to my closet and put on a bright yellow raincoat (it was the only yellow I have) and I have been wearing it all day. I will be praying for you and your family. STAY STRONG!!<3

    Like

  20. jennalou9 says:

    Seth- you are amazing! I’m astounded at how much of a fighter he is. I don’t have any yellow clothing to wear, but I bought some sunflowers and thought of Seth when I put them in a vase. Stay strong little man, you have the whole world rooting for you buddy! Love and best wishes from NYC 🙂

    Like

  21. Cassie says:

    You are such a inspiration to everybody Seth. I am wearing yellow right now and because of u I will wear yellow all the time. I am so sorry that I can’t send a pic. But I do not have Instagram and Facebook. But if I did I would send a pic in a minute. I hope you get better soon. If there is anything I can do, I would love to. Thanx. Hope u feel better

    Like

  22. Niulka Rodriguez says:

    Hello I want to say I read your story because our Optometrist employer encourage the team to wear yellow for Seth today. I am very inspired to know he is truly a beautiful lending from God and as you are a strong supportive parent as well. My sister battled leukemia and today I am grateful to read and know that in similar aspects, the strength is unbearable when love is destined. May God bless Seth, your family, and friends, and I look forward to seeing his inspiration and many who are inspired to know Seth.

    Like

  23. Kelly Manning says:

    Seth, my boys love looking at your pictures and all picked out their yellow shirts to wear today (Except my Colin, 4, that wore his Paw Patrol shirt for you.) You and your family are a symbol of strength! I wish we could do more for you. Stay strong little man. You have many more chapters that need written! Love and prayers from Pennsylvania, USA.

    Like

  24. Jonathan says:

    I wish Seth will be healed soon 🙂 I am really happy to see that you are not giving up your child. For me it is so touching to have such a great parents 🙂 Please Seth dont give up on the GVHD I wish that you can be healed soon and I hope the second boone marrow transplant will be a 100% success GBU Seth and Seth’s Parents dont give up!! 😀 #wearyellowforseth

    Like

  25. Jocelyn says:

    Hello! I saw seth’s video the other day, it really touched my heart and i am supporting seth all the way from mexico! 🙂 i also saw the tag #wearyellowforseth but i dont know where to send my picture with my yellow shirt :/ blessings and my prayers go out to seth!

    Like

  26. Aaliyah says:

    Wearing yellow for you Seth. You got this. Almost everyone in my class wore yellow today your our hero (a very adorable hero) Keep smiling. We all support you. Be strong.

    Like

  27. Jocelyn says:

    Hello! I saw seth’s video the other day, it really touched my heart and i am supporting seth all the way from mexico! 🙂 i also saw the tag #wearyellowforseth but i dont know where to send my picture with my yellow shirt :/ blessings and my prayers go out to seth!

    Like

  28. Margaret says:

    This story is heart breaking sending you all my love and prays my god heal you from the top of your head to the bottom of your feet I pray the heavenly angels watch over you little angel god bless you and your family
    all my love from America

    Like

  29. Héctor says:

    How’s our little hero doing? Hope he’s getting better. I saw a lot of people in my country (Mexico) wearing yellow (like I did) and, when I asked ’bout that, 90% of them did it buecause of Seth. This story became worldwide and we all pray for him to get better every single day, his smile is a big par of us now, keep smilling for many many years. And you, mom & dad, keep up the hard work. Great parents. Hope to hear from Seth’s health soon.

    Liked by 1 person

  30. Ann Marie Casey says:

    I’m laying in bed next to my precious 7 year old son named Christian. I adopted him at birth and am so greatful GOD chose me to be his mom. My son has endured many hardships due to his mother’s drug usage during the pregnancy but is doing well. My thoughts and prayers are with the 4 of you. I pray the transplant helps. God bless!

    Like

  31. just a man says:

    I don’t know you; and, I live on the opposite side of the world from you, but seeing Seth in the “wear yellow for snapchat” thing, and seeing his big smile, just really got to me. I’ve never been the type to be heavily affected by things that are so seperated from me, but this really got to me. im just a 20 year old college student, I cant physically or monetarily help, but I just want you to know that my heart goes out to you and to seth. Seth is a beautiful little boy and I really want him to be happy and live a happy life. I really wish there was something I could do besides extend my well wishes. tell Seth I wore yellow today.

    Like

  32. Aliesa Kaneshiro says:

    Aloha, Im from Hilo Hawaii and like many others have come across the video post asking people to wear yellow on march 27 for Seth. Reading his story on the Buzzfeed website through Facebook, he’s come to be a great inspiration to me. Now this may sound a bit strange but quite a few people in Hawaii believe in great connections through the mind and body in a spiritual way. ” I recently came across a dream of me meeting seth and talking to him in his hospital room, he found out that I had come all the way from Hilo Hawaii and his face immediately lit up with a smile from ear to ear. He had asked me to go back home and to take pictures of every place that he wanted to see for himself and asked me to send it to you the parents of our beautiful island. I then went home and took all the photos that he wanted and I also printed out all of the pictures so he could have it for himself. Soon after I visited him multiple times and we had became the best of friends” I have the biggest heart for children like your son. I believe that he is such an inspiration to me that he has been battling through this his whole life! You are such a trooper big boy!! I really hope that we can continue to talk and have discussions as I would like to meet you one day!!! And if possible please message me back through Facebook at Aliesa Kaneshiro, I would like to further this response.
    With much love from Hawaii
    Aliesa Kaneshiro

    Like

  33. Daf says:

    Be strong Seth! I am sure you will get through this! You have an awesome family and you are full of love! All my blessings are with you

    Like

  34. Emilie says:

    Seth. You are a very strong boy and I wore yellow yesterday . My outfit had your name written all over it even me and my friends wrote your name in yellow(of course) on each others foreheads !! You are a gorgeous little boy and only 7 years younger than me but so much stronger! Keep safe and keep happy! Love em x

    Like

  35. Klennerfam5 says:

    I have photos of my classes for Seth, however I did not want to post them online for ALL to see, just Seth. Is there a contact email I can send them to?

    Sending our support from Milwaukee Area in Wisconsin USA

    Like

  36. Ian Blais says:

    We are awestruck at the power and determination of Seth and the Lane family. Our family hopes that Seth’s numbers always fall in his favour.

    Than Blais Family
    Ottawa, Ontario, Canada.

    Like

  37. Katy says:

    I am French and I speak very little English but I wanted to tell you that Seth history I do pay a lot of tears. Seth I send you in France, millions of hugs and kisses. You and your family are very strong, you are a model for the world.

    Like

  38. Linda Iren Dahl-Neverås says:

    Hello:-) I have an 10 year old brother, who have made a yellow bracelet with Seth’s name on it. And he would like to send it to Seth, and he wonders if he can get his address? If you think it’s okay you can contact me on my mail: lindairen@hotmail.no. Stay strong Seth, we are cheering for you ❤ Big hug from Linda and Idar from Norway.

    Like

    • LJLane says:

      Hello that’s very kind please thank your brother. You can send to Seth Lane, ward 3, Great North Children’s Hospital, Royal Victoria Infirmary, Newcastle Upon Tyne, England NE1 4LP

      Like

  39. Ari says:

    Seth, you are an inspiration to millions of people! You are a fighter and a hero, and I hope and pray that you beat your illness at the earliest. I want to thank you for being a source of strength and motivation for me! You are awesome!!!!

    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 )

Google photo

You are commenting using your Google 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 )

Connecting to %s