---

 

 

 

 

 

 

 

 

 

 

 

CLAUDIA AND JESSE'S STORY

click the heart to go back to the front page

January 2007

I have five beautiful children, a daughter and four sons, ranging in age from 20 to just one. My fourth child, Jesse, was born in 2000. He was a lovely baby (he features on many pages in the website), but he was often sickly; suffering from repeated infections and eczema. Despite many trips to many doctors and homeopaths nothing serious was ever diagnosed.

That all changed in September 2005 when I took him to the doctor as he had a very nasty mouth ulcer and was generally under the weather. My wonderful GP spotted how pale he was and insisted on a blood test. The results were alarming, he was so anaemic the doctors were surprised he could even stand up, let alone run around and play cricket as he had been all summer. His white cell count was also very bad, so he had no resistance against infection.

Within two days he was having a blood transfusion, and then we were off to Great Ormond Street hospital for a bone marrow biopsy. Eventually he was diagnosed with Myelodysplasia (MDS), a disease very rare in children, basically his bone marrow wasn't working properly. The last year and a half has been very difficult, Jesse no longer goes to school as he is too vulnerable to infection and he needs a transfusion every few weeks. If he has a temperature we have to rush him to our local children's hospital for days of intravenous antibiotics.The Royal Alex, Brighton, has been fantastic and is full of kind and caring doctors and nurses. We can't thank them enough, so I decided to donate 5p from every sale to Rockinghorse, a charity dedicated to helping make Sussex children's lives better in hospital. To find out more, please click on the link below...

From the beginning we have been told the only cure is a Bone Marrow Transplant (BMT). Sadly none of us were a match. But were incredibly lucky and found a very good match from a non-related donor, a very kind 34 year-old German man (if you want to know more about becoming a potential bone marrow donor please take a look at the Anthony Nolan website by clicking on the link below).

We are now preparing for the transplant, which isn't an operation...The new marrow is infused into him rather like a blood transfusion. Amazingly the cells find their own way into the marrow and slowly start to grow there. But it is a long and risky procedure, involving strong chemotherapy to kill the old marrow. His immune sytem will be non-existent so he will have to spend 7-8 weeks in isolation in a specially built room with filtered air. He is only allowed three named visitors during this time. There are many dangers including infection and rejection; we know he is going to be very ill.

Jesse will be admitted to Great Ormond Street on 14 January; he receives the new marrow on the 1 February. We don't expect to be out until the end of March, after which he will be on a lot of medication and in semi-isolation at home. I, and Jesse's dad Derek, who has been a tower of strength through all of this, will be by Jesse's side at all times (while juggling our very robust 12 month old son, Bernie).

As I am involved in every aspect of purple-heart.com, including making the tie-dye, painting the china and sending out orders, I have come to the conclusion that to be able to focus 100% on our precious son, I have to take away some pressure. Please do keep ordering by phone. My business and my loyal customers mean the world to me, and I hope to be able to resume "business as usual" in the spring! Wish us luck... we will need it, and thank you so much for your understanding and for your continued support.

Claudia Meynell, January 2007

Derek, Jesse, me and Bernie, November 2006

*UPDATE 27 APRIL 2007*
After 14 gruelling weeks in Great Ormond Street Hospital Jesse and I are preparing to come home. We don't have an exact date but hope to be out in the next two weeks so long as all coninues to go well. Jesse has been very ill, but the good news is that it looks like the bone marrow transplant has been successful. When we are finally discharged we will have been in hospital for four months, much longer than we expected. We hope that Jesse will continue to get stronger at home. He will on a lot of medication and still be in isolation for at least another six months.

*UPDATE 13 MAY 2007*
Jesse was discharged on 4 May. It was touch and go up until the very morning...but we made it! It has been quite hard not being in hospital, we have 24 doses of drugs to prepare and give a day and many restrictions on what we can do and where we can go. It is very scary not having a nurse on hand 24 hours a day, but I am beginning to relax and it is lovely to be home. Jesse is very happy as are his Dad and brothers and sister (except perhaps the baby who is a bit put out and very Mummyish).

Here is our brave warrior! His hair is growing (but it's coming back black), his eyebrows are very thick and dark (they'll thin in time) and his cheeks are round from the steriods. He is now only on a small dose so they will be back to normal in time. In spite of all this and everything he has been through, he is very much our funny, quirky and spirited little boy and it is wonderful that he has done so well! We are very proud.

*UPDATE 6 NOVEMBER 2007*
The past few months have been very up and down, Jesse did well at first, but the GVHD returned in July. His gut is very badly damaged. His steroids were increased and he improved but in September he went downhill again. This time it was pneumatosis, a nasty disease of the bowel caused by steroids. He endured 48 hours of nothing to eat and things improved but unfortunately the condition returned and he is in hospital in Brighton at the moment. He isn't allowed to eat anything so he is being fed intravenously. He is being very brave, and continues to amaze us with his positive attitude. He may have to stay off food for another three weeks. It is very hard for him so we are taking every day at a time. We'll keep you posted...
Jesse at burying his foot in the pebbles at the beach October 2007

*UPDATE 29 NOVEMBER 2007*
Since the last update we have had a terrible time. The evening after I wrote the above, Jesse started to run a slight fever. We took him striahgt into hospital where his condition worsened overnight and into the following day. His fever was very high and he had diarrhoea and vomiting. He spent most of the day asleep. There were no clues as to what was up with him, he was started on two strong iv antibiotics. In the early evening a nurse came to read his blood pressure, she went away and a few minutes later came back and did it again. When I asked why she was doing it again she answered that she didn't believe the reading, so had got a new machine. The reading was 46/23, virtually nothing at all. Within two minutes the room was full of ten people, consultant, doctors and nurses. I know now that on Wednesday 7 November at 5.30pm we were minutes from losing our precious little boy. I will never be able to thank them enough as their quick actions saved Jesse's life.
The doctors pumped his blood system with fluid time and time again in a desperate attempt to regain blood pressure, which kept dropping. Eventually they stabilised him enough for him to be taken down to intensive care where they pumped him full of adrenaline and other drugs, anaesthetised him, paralysed him and ventilated him. It was a very frightening thing to watch. He was transferred by a mobile intensive care team to the Great Ormond Street Intensive Care Unit where he spent another two days in a drug induced coma. They took out his line and then the ventilator and we were transferred onto Lion Ward. His problems didn't stop there. The next day he developed breathing difficulties and needed oxygen all the time, also his heart rate became very slow. X-rays showed that he had fluid around his lungs and his right lung also had a significant amount of fluid in it, so we added pneumonia to the list. After adjusting some drugs his heart rate improved, later and echocardiogram of his heart showed an enlarged left ventricle, a leaky valve and fluid around his heart. These were all due to the vast amount of fluid (over 2 litres) the doctors had used to resuscitate him. Incredibly luckily all these conditions improved and after nearly three weeks we were allowed home.
Later we found out that he had had septicaemia (blood poisoning) caused by a line infection and that his body had gone into toxic shock. On top of all of the above he has had two general anaestheics, one to take his line out, another to put a port-a-cath in and he has gone from nil by mouth to feeding enough on a bland diet to be allowed home with no supplementary feeds!
So we have had a very stressful and worrying three weeks but I’m happy to say Jesse is almost back to normal. The strength and resilience of that child is awesome! While the consultant was in the process of saving his life to turned to me and said “This is one very strong young man!”; I don’t think he could believe that he was still alive.

It is wonderful to be home! While we were away the shop kept running smoothly thanks to the hard work and dedication of my wonderful purple-heart team! I can't thank them enough as at least they took one big worry off my shoulders. If we are a bit slower than usual, please do bear with us, we'll get there eventually. As ever thank you too, our customers are very, very important to us...

*UPDATE 20 JANUARY 2008*
We hope you all had a very happy Christmas and wish you a very peaceful and healthy New Year. Jesse has been pretty well since I last wrote (apart from a couple of days in hospital last week). We had a lovely Christmas, we were very, very grateful to have Jesse with us and on such good form! We are keeping our fingers crossed that he will go from strength to strength and maybe be back at school soon.

Jesse on Boxing Day wearing his Christmas helmet and face camo!

*UPDATE 17 APRIL 2008*
Thank you for all your kind comments and support. Jesse is doing pretty well, we had a couple of spells in hospital in January but since then he has been fine. He can eat what he wants (although he is faddy and picky) and his gut is much better. On April 13 he had a very Happy Birthday and is pleased to be 8! His lymphocyte counts aren't too good yet so his lines stay in for a while as the medicines continue but the doctors have said it is ok for him to go back to school. He starts back part time on 21 April! He has already spent quite a few hours in school in March so it shouldn't be too much of a shock. He has made lots of new friends and his class is lovely, so fingers crosssed!
Here are some recent pictures, they tell a better story than any words can...

Jesse eating a huge piece of Scooby birthday cake!

Jesse throwing a snowball in the garden.

Jesse the ninja!

Jesse just having fun!

*UPDATE 15 MAY 2008*
As I write, Jesse is at school...his third full day. It has been a bit of a struggle but Jesse is now having a whale of a time. As he bounced off the furniture at 7am this morning I had to threaten to take him back to Great Ormond Street so the doctors could take out some bone marrow! Of course he knew I was joking. I'll get a picture of him in school uniform as soon as he can stay still enough!