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One of the scariest things you can possibly imagine

We’re always grateful at CLDF  that so many of our families are happy to share the stories of their transplant journeys in order to help others. When the children involved are very young, the story often begins with prolonged jaundice or perhaps a constantly hungry baby but for Catherine’s son, George, the experience was very different, as she explains.

Our youngest child, George, was a very happy and healthy baby.    He developed cradle cap on his scalp at a few months old, which turned into eczema as he got older.   When he was a year old, his left ear also started to have a strange odour.   However there were no signs of infection and  he was happy and well in himself so we monitored both but weren’t overly concerned.

By the Christmas following his second birthday, George’s eczema on his scalp had worsened.   At the same time he started to become a lot more tired, he was very pale and he would wake in the night with severe tummy pain.   He was no longer his usual happy self.   After various blood tests (which showed raised liver enzymes but which were attributed to a virus), George was finally admitted to our local hospital when it became clear to us that something was seriously wrong.   After two days of tests the doctors told us that George’s liver was badly damaged but they didn’t know what was causing it.   We were sent directly to King’s College Hospital who, again, carried out a series of further tests.

Devastating diagnosis

At the end of an unimaginably difficult and long few days, George was diagnosed with Langerhans Cell Histiocytosis (LCH).   It is an extremely rare, predominantly childhood, cancer that usually presents itself as a skin rash.   In very rare cases, the LCH spreads to other parts of the body.  At the time of diagnosis George’s LCH was in his bone, liver and spleen.  It was an incredible shock.

The doctors explained that George’s liver was severely damaged but it was still managing to function.  The more pressing issue was the cancer itself which was still active in his body.   We were referred to the Royal Marsden and told that George would need to start 12 months of chemotherapy and steroids to treat the LCH.   He was just two and a half.

 

Prior to being diagnosed with a cancer that affects less than 30 children a year in the UK (and of those, approximately six have liver involvement), neither George nor his two big sisters had ever had anything more serious than a head cold.   Initially it was difficult to comprehend; terrible things like this happen to other people, not us.    We were utterly devastated and terrified, but there was very little time to process everything because we knew George had to start treatment immediately to ensure the cancer didn’t spread even further.

 

King’s told us that they would continue to monitor George and it was possible that once the chemotherapy had killed the cancer cells, his liver would continue to function, but it was very much a “wait and see” game as to whether or not he could avoid a transplant.

So George underwent his year of chemotherapy and responded well to treatment.  At the end of the 12 months he had an MRI which gave him the “all clear” (i.e. no sign of any active disease).   Unfortunately, six days after receiving that news, I noticed a piece of dry skin on George’s scalp — which I knew immediately was the LCH.   His cancer had returned almost as soon as the chemotherapy was stopped.

 

We now know that in very rare cases (about two children a year in the UK), the LCH can reactivate.  George would require up to five further rounds of more aggressive chemotherapy before anything else could be done and his liver was unlikely to withstand the further treatment.   At this point, George was only three and a half and his prognosis was poor.

 Trip to USA for treatment

He started the next round of chemotherapy but my husband, Sam, and I had started researching other potential options and thankfully we found an oncologist in the US who treats LCH differently.    We flew out to Cincinnati, Ohio, five days after first contacting him.   He immediately took George off the chemotherapy and put him on an inhibitor which stops the mutation which causes George’s LCH.   It is a daily medication which George continues to take today; it is unclear how long he will need it, but it has none of the side effects of chemotherapy.  Within two days of starting the inhibitor, George’s skin rash started to disappear.

We stayed in Cincinnati for two weeks and returned home to England with a lot of hope for the future.   However a routine blood test a few weeks later showed that George’s liver, which had remained stable throughout chemotherapy, was starting to deteriorate.

Liver transplant

Over the next 18 months George developed portal hypertension, he became severely jaundiced, and his abdomen was distended (he looked nine months pregnant).   In December 2021 we were told that George would need a liver transplant. We were keen to investigate living related donation, and as George and I have the same blood type and Sam is not a match, we knew that I was the only option.

As George’s mum, the decision was easy to the extent I knew that I would do anything to help him; he is my child and therefore his life means more to me than my own.   That said, it was slightly more complicated as we had to consider George’s two sisters and the potential implications it could have for them if I was a live donor.   However, as soon as we met with the King’s transplant team and realised that we were in the best possible hands, I had no doubts that I wanted to be George’s donor if I was approved.

I was relieved to have passed all the necessary tests as George was declining rapidly.  In the weeks leading up to the surgery he was in the very final stages of liver failure.   He would struggle to walk upstairs and slept most of the day.

When the day came for the surgeries to take place, George and I were in operating theatres next to each other and we had the most amazing team of surgeons, doctors and nurses.  They removed 25% of my liver and I’m told that it took less than five hours for them to complete my entire surgery.   George’s operation was much more complicated because of the extent of his liver disease. It took the team over four hours just to remove his liver and he was in surgery for a total of 13 hours.

However, as soon as his new liver was in, his liver function improved immediately and my husband says that you could see the jaundice leaving his body (the whites of his eyes had been yellow for months and all of a sudden they were white again).   George spent less than 24 hours in the PICU after the transplant and was back on Rays of Sunshine Ward within 48 hours of surgery.

I was discharged from King’s on Day Five post-surgery.   George remained on Rays for nearly four weeks, not because of any complications or rejection, but simply because the extent and duration of his disease meant his recovery was a little longer.   However within one week of the transplant he was walking up and down the stairs and by the end of his stay he was running up and down the ward kicking a football!

However, as soon as his new liver was in, his liver function improved immediately and my husband says that you could see the jaundice leaving his body (the whites of his eyes had been yellow for months and all of a sudden they were white again).   George spent less than 24 hours in the PICU after the transplant and was back on Rays of Sunshine Ward within 48 hours of surgery.

I was discharged from King’s on Day Five post-surgery.   George remained on Rays for nearly four weeks, not because of any complications or rejection, but simply because the extent and duration of his disease meant his recovery was a little longer.   However within one week of the transplant he was walking up and down the stairs and by the end of his stay he was running up and down the ward kicking a football!

Life after transplant

We have both been incredibly fortunate in our recoveries.   I was sore for a few weeks following the surgery and would get tired quite quickly.  George, however, was like a completely different child!   He could suddenly move his body so much more easily, and was discovering that he had more energy than he’d had in years. His transplant had taken place on April 1 and I had planned to keep him at home until the new school year started.  However George was more than ready to return to finish the school year with his Reception friends.   Twelve weeks post-transplant he competed in his school sport’s day and he hasn’t really stopped moving since!   He plays football and tennis several times a week and most days he has more energy than the rest of us.

 

There is no doubt that both surgeries had an enormous impact on our entire family. Finding out that your child needs a liver transplant is one of the scariest things you can possibly imagine. However the living donor route allowed me to feel a slight sense of control in an otherwise impossible situation. We had a scheduled date for the transplant, we weren’t  waiting for a phone call telling us there was a potential liver for George, and we were able to put plans in place for George’s two sisters — both for during and in the weeks following the transplant.

 

We first heard about the CLDF during our stay on Rays of Sunshine following the transplant.   We were offered a range of support but our favourite thing was receiving a copy of “Joe’s Transplant Story” which talked about the entire liver transplant process.  We read the story to George’s Reception class when he returned to school in June and it really helped them understand what had just happened.

School support


We had been involved with George’s school,  Hilden Grange Preparatory School, six weeks before he was first diagnosed with LCH when his eldest sister started there, so they really have been with us for the entirety of George’s illness. I’m happy to say they have helped in dozens of ways.   We had just come back from the US for his LCH treatment when his liver started to decline.  He was due to start nursery at that point so the school allowed him to attend when he was able and there was a compassion and flexibility that really was incredible.

 

George was in Reception when we found out he would need the transplant; he was very unwell but on the days he felt strong enough to go to school, they welcomed him and looked after him, taught him with the rest of the class and gave me total confidence that he was being cared for.  I trusted them implicitly which was invaluable at such a stressful time.   They sent work home for him (at my request!) for after the transplant, and did weekly (sometimes daily) Zoom calls with us both from home before the transplant, and after from King’s, so he could join for story time and tell his teachers and friends about what he was doing.  They were absolutely amazing!

 

Hilden Grange also looked after George’s sisters throughout the entire process, constantly making sure both girls felt happy and safe at school when their brother was very unwell.   They also very enthusiastically joined in with Big Yellow Friday. We feel so lucky to be part of such a supportive amazing school community.

Transplant Games

This summer was our first time at the Transplant Games.   It was absolutely amazing!   We had an incredible time.    The Games themselves were so well-organised and such a lot of fun, but beyond that it was wonderful for all of us to meet other transplant families.   Sam and I enjoyed speaking to other parents, George loved meeting other children who also had massive scars and had to take medicines like him, and it was so special (and helpful) for the girls to meet other transplant siblings who had an idea of what it was like to have a sick brother or sister.   It was also an incredibly humbling experience to see all these amazing brave children together, and to hear everyone else’s remarkable stories.   We’re already looking forward to next summer!

We know that living donation is an option which many parents consider and I couldn’t recommend it enough.   Helping your child, or a loved one, through organ donation is such a gift and I see it as a tremendous honour if you can help someone in that way.   It can feel scary and overwhelming, and if you have other children there are so many things to consider.   But I can say without a doubt that after having George and his sisters, donating part of my liver to George was the best, most important thing I have ever done.    Anyone with a child who needs a liver transplant will know that they are facing a situation many can’t even begin to imagine; but living donation gives you a chance to take an unimaginable situation and make it slightly less out of your control.   There is something practical you can do — something enormous — that can help save your child’s life.   There are no words to explain how that feels.

Join the discussion One Comment

  • Nawab Ali says:

    I hope you both will be better.. We have also gone through this phase.. My son Haris has been given a liver by his mother.. There are very difficult situations but you can face them with courage.. May Allah bless George and you with good health.. Amen
    best wishes from Pakistan

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