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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.

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Robin Ward at Great Ormond Street Hospital.

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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.

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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.

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

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

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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.

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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.

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Showing the GVHD in his face and hands

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

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GVHD on his belly that is very distended due to steroids

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

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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.

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

  1. Marshall says:

    Hi Seth, I am so sorry I was not able to partake in yesterdays “Wear Yellow For Seth”. I actually did not hear about it until late in the day when I came across your video on Snapchat. I was at work at the time so I had to wait until today to read about your journey. While reading these blog entries they brought me to tears many times because it hit very close to home. Last year my mother was diagnosed with AML (Acute Myeloid Leukemia) so I know a little of what its like going day to day waiting for blood results and putting all of ones hopes into a transplant. Unfortunately, my mothers cancer progressed and she became ineligible to receive a transplant. She passed away several months later. She was a fighter just like you. Every day had the most beautiful smile just like the one I see you have in your pictures. You are a handsome and awesome young man. Keep strong not just for yourself but for your family as well. People are rooting for you all around the world.

    Like

  2. adaptationofivy says:

    Reblogged this on adaptation of ivy and commented:
    I thought I would share this with my viewers, as well. As many of my friends and family most likely already know, my husband was born with Severe Combined Immune Deficiency, but after 31 years he is still kicking!
    Although we are currently going through some trial some times right now, I hope that this family finds the strength and courage they need to go through this. I’m sure that 31 years ago my mother and father in-law felt the same helplessness as this family does now, and as we all feel when things such as this happen to those we love. Each day comes with its own struggles, no matter how big or how small. We must push on, though!
    If little Seth’s family sees this, please know that there is hope! My handsome man was able to make it, so can little Seth!
    -Isaiah 33:24
    #wearyellowforseth

    Like

  3. lukasutherland says:

    wow what a tough 5 years you have had, I have just finished reading your blog and it is all so familiar my son luka also has x linked scid he was 10 months old when he was diagnosed which was picked up by mistake like you I took him back and forth to drs and emergency to be sent home and told he was fine and that I was just being a paroniod first time mother thankfully I kept taking him back as they said if he was left a day or 2 longer we would have lost him. Seths journey sounds very much like Luka’s with chest drains and ventilator. Sounds like we were both blessed with very special boys who bet the odds and I have no doubt in my mind Seth will beat this for good. I sent you some photos via private message on Facebook hopefully you get them. Wishing you guys all the best you are doing a awesome job! love the bubble boy family in New Zealand

    Like

  4. Maria Coles says:

    Hi Leane

    After reading your story a week ago, I feel an affinity connection with your son Seth and I would like to tell you that you are both inspirational parents as I don’t think I could be as strong as what you both have been.

    Having a 2, 4, 13 & 16 year old I truly understand what you are going through in more ways than one, as I lost my late husband to cancer so I can relate to the roller coaster ride you endure.

    You are such a beautiful family & I am overwhelmed with emotions at how much of a champion in body mind & soul Seth is.

    I pray for you all of you everyday & wish I could offer more than what I have financially as we don’t have work at the moment. But rest assured when we are back at work I would sincerely loved to help you out financially.
    I hope in time that all the number Gods are always in your favour.
    Give our love, hugs& kisses to your little man.
    Take care Leane you are the best mother ever. xoxoxoxox

    Like

    • LJLane says:

      Thanks for sharing. Sorry for your loss. Your message is very kind. Thank you. Please don’t worry about helping us financially. This was not about raising money. Seths treatment is all covered by the national health service. Thank you

      Like

      • Maria Coles says:

        Thanks for your reply Leanne….You are so lucky that you have a country that covers all the cost so you can focus on Seth getting better. 😊

        You are always in my thoughts not too far away & I pray for your continued strength, love, patience, wisdom & support.

        Also I would like to say thank you for all the photos that you share on facebook, Twitter & Instagram as we are your biggest fan….it’s so comforting to see the smile as bright as the sun on Seth’s face…I hope he feels better soon🙏please give him that extra hug from us……..you are a super Mum ❤️

        Thank you again for sharing xoxoxoxox

        Like

  5. Michele says:

    I am following Seth’s story for a few reasons. One I was touched by his video I cried when I saw it, Two yes I wore yellow on Friday as did my son for Seth. Now that the hype is over and everyone goes back to a normal week, I still care about what lays ahead for this little boy. So I will be looking at your blog in the upcoming weeks just to see how he is. God bless you Seth and your family I may not still be wearing yellow but you and your family are still in my prayers.

    Like

  6. Pam says:

    You, your family, and Seth are so brave and strong. You must hear this all the time, and I imagine that when you hear it, you probably don’t feel like you are strong. And I am sure there are times your are very afraid for Seth. But what makes you brave and strong is that you keep going, getting up in the morning, doing what you have to do for Seth and your family. You found a strength that not everyone can find, and for that, Seth and your family are blessed. Although your focus is on Seth, I have heard from many wise people that part of helping children be healthy and strong is helping their moms and dads be healthy and strong, so they can keep giving. You have done a wonderful job!

    Like

  7. Pran says:

    Seth is such an inspiration to me and my family. Even in his hardest times, he still has that smile on his face and I love that about him! He is the cutest 5 year old I’ve ever seen and he is handling this very well! I participated in the #wearyellowforseth. Every time I refreshed my instagram feed, a few thousand more would be added to the feed. Seth has a lot of support and everyone wants him to feel better! I honestly pray for you and your family everyday and I am 100% certain that he is going to get better! I really want to help you guys financially, but that can only happen if you guys are ok with it. If everyone that supports Seth donates exactly $1, his whole treatment can be paid for with no debt! $1 from everyone can make a HUGE difference! Wishing your family the best!

    Like

    • LJLane says:

      Hello Pran. Thank you for your kind message. However, Seth is in England and his treatment is paid for by the National Health Service. We are not doing this to ask for money or raise funds. Just to show Seth and keep him happy and strong. Thank you

      Like

  8. Jada butler says:

    Stay strong Seth!💛Me and my friends have you in our prayers.I am crying right now cause We are thinking about you 24-7.i accutaly sent you an email. Hope you can write back

    Corinth ,Ms

    Like

  9. gabriela says:

    SETH BEEN THROUGH ALOT!! SETH IS A VERY STRONG BOY!! N HIS MOMMY ALWAYS AND WILL BE WITH HIM!! IM SO HAPPY FOR SETH THAT HE IS FIGHTING TO BE FINE !! GOOD WORK SETH U CAN LIVE FOR EVER 😌👶😌👏💪

    Like

  10. Stephanie says:

    Hi,
    Writing to you from sunny Australia…i think you are an amazing family and i think this blog is amazing…my work colleagues and i wore yellow for Seth and raised our tip money for the day for him…its not much but i would like to know where you would like me to send it to?

    Like

  11. Patrick Stanley says:

    Young Man you have all the requirements to become A Royal Marines Commando. Keep fighting and never say never. You are strong and powerful, I send you my best wishes and hope you continue to grow strong and get well. I will continue to look in on your blog and send you my best wishes. You now have so much to look forward to, look after you’re mum & dad and your little brother Hugo !

    I hope you’re well on the road to full recovery, your poor little hands upset me! Are they any better now?

    Best wishes to you all stay strong and keep fighting!

    Like

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