As you will know, a couple of months have passed now since Gaurav’s transplant. We have been through a lot of drama and near-crisis situations since then but can at last tell you something of what has been going on.
We began to see a steady increase in his white cells from Day 10 post transplant which is of course what we hoped and prayed would happen. You may not know that every child
has different chemotherapy-related problems and Gaurav’s main problem was chronic diarrhoea which meant he had a very sore bottom and his skin around that area was badly affected. He even ended up with a catheter for a week or so because passing urine was so painful. Eventually the side effects of the chemotherapy slowed down.
He stopped eating and was given nutrition via IV for a while and eventually a naso-gastric tube was passed through his nose to his stomach for us to start giving him calorie-filled feeds.
In the middle of January the hospital said that we could have a brief home visit which was wonderful: we tried a few hours at home with Gaurav which felt so good and we could see how much more relaxed and at ease he felt being home. But then he began to spike temperatures and suffered from some Graft v Host Disease rash. This is usual post-transplant and after a week or so of steroid treatments this calmed down and we were ready to try home again at the end of the month. Again we had a few hours at home one day and had planned an overnight stay but before that could happen he spiked a temperature again.
Gaurav and Sunny at home for a little while: Sunny is giving him a gravity feed of water as he wasn’t able t drink anything by mouth
Over the next few days we saw him swell drastically – his face and neck were badly affected and his eyes were forced shut because of the swelling. His temperature was spiking every two to three hours and he was in considerable discomfort as he waited until his next dose of paracetamol was allowed. We do have photographs of Gaurav at this stage of his illness but have decided not to publish them – we feel that some things should remain within our family.
It was confirmed eventually by blood tests and a biopsy of his lymph nodes that he was suffering from a post-transplant lymphoproliferative disorder caused by the Epstein Barr Virus, more commonly known as glandular fever.
You will understand that this was an incredibly testing time for us all. Our consultant told us that in the 14 years she has worked with bone marrow transplant patients, this was the first time she had seen this happen post-bone marrow transplant – this type of disorder is more often seen in patients who have received solid organ transplants.
Thankfully, two weeks later it was all under control. Unfortunately though the drug that was given to treat it has meant that his immune system is further suppressed and will take up to twice as long to recover.
On the basis of third time lucky, we thought about trying to go home again BUT before we could go… You guessed it he spiked again! This time there were signs of infection and he was treated with our old friend, IV antibiotics.
For the past two weeks Gaurav has been sleeping a lot! Some days 20 hours. This is most likely due to fatigue that a person can normally suffer once they have had glandular fever but our medical team are amazing and leave no stone unturned in making sure they check for anything and everything just to be on the safe side. So he has had various tests done this week including an MRI of his brain, an EEG and a lumbar puncture to make sure that nothing else is causing him to sleep so much.
He is still not eating anything and the only calories he has are through his tube feeds. Since the glandular fever he has not even sipped water from his beaker. His mobility is also badly affected. He has been bedridden for weeks and his muscles are very weak and his strength is limited.
We are so close to going and and just need him to remain well enough for this to happen.
Being discharged is a gradual process which involves day leave, night leave and weekend leave. We are on our third attempt of day leave at the moment.
Just a brief mention of our other little angel, Gaurav’s sister Kiran. She has been truly incredible over the last couple of months, which have been so confusing and frightening for her. She adapted really well to being cared for by other family members and spending lots of time getting spoilt by her grandparents. As soon as Gaurav’s white cell count was steady she was allowed in to see him. Gaurav had a really good cry to her the first time he saw her.
I know that we keep saying it, but we do appreciate all the support and help we have received from friends and family throughout this time, when we haven’t been able really to communicate as much as we might have liked about the way things were going. A huge thank you as well of course to all the staff at BCH – they have been marvellous.
We’d also like to end on a positive note: Gaurav’s Birmingham Children’s Hospital pal, Rhiane, who has been the focus of a lot of recent bone marrow donor appeals, here and in Canada, is in remission! Fantastic news for her and her family. We know just how good it feels to have your child back home with their family. Every good wish and prayer for her continued improvement.