Here is a picture of Gaurav with Rhiane, another child who desperately needs a bone marrow transplant.
Gaurav was running a temperature and sick earlier this week, so we had to do the usual: take him into Birmingham Children’s Hospital for 48 hours on intravenous antibiotics. As you can see, he was soon looking and behaving like the little boy we know but he had to stay in until this morning, just to make absolutely sure, particularly with the BIG day approaching.
We are so glad that he had a chance to meet Rhiane while he was there.
Rhiane and her family are where we were earlier this year. She is staying in Birmingham Children’s Hospital at the moment as she has a condition called Aggressive AML – another type of blood cancer and she urgently needs a bone marrow transplant – chemotherapy has not been successful for her. Rhiane had her seventh birthday in hospital yesterday. She is an only child of Indian and Mauritian parents, so her very particular ethnic mix makes finding a donor match that much more of a challenge.
Here she is getting ready for Christmas, in hospital, writing her letter to Santa. Just like our Kiran, she loves that Minnie Mouse!
We have been so lucky to find a match for Gaurav and we want to carry on campaigning so that matches can be found – quickly – for other children, like Rhiane.
The campaign has been phenomenal so far – we think that at least 3,000 new Asian donors have registered since we began. Four hundred people registered just last weekend in Slough and there are events being planned carrying on through next year – we’re even venturing North of the Border to Glasgow in January!
I have to be honest though and say that Gurprit and I are feeling steadily more tense, as the date of Gaurav’s hospital admission for the transplant draws ever closer. He will go in on Monday and we have spent the time since my last post on several visits to hospital and meetings with specialist staff explaining to us exactly what is likely to happen.
Of course, the chemotherapy and related treatment is designed to help Gaurav get better but the fact is, it will be horrible as we are going through it. Let me tell you a bit about where we are now, and where the journey will take us over the next few weeks and months.
I think I mentioned in the last post that Gaurav had his ‘central line’ fitted – this is in his chest and has three tubes hanging out of it. He coped extremely well with the insertion of the line and it has already been working for him as several blood samples have been taken. You can imagine though that keeping an active two year old away from medical equipment in his body isn’t easy! Gurprit has him in a vest all the time, to try to stop him touching the line.
He has been his usual playful self, which reassures both of us and, as Gurprit says, if he is still smiling, then so are we!
He has had heart echo and ECG tests as well as a kidney function test. These are all to calculate precisely the chemotherapy dosage and to give a base line reference which can then be monitored and tested after the chemotherapy to see if they have been affected.
On Monday past, we were at hospital again for a dental check and an appointment with our consultant.
Why a dental check? Because our mouths and throats are both delicate areas and also very prone to infection so the team at the hospital need to find any dental problems and address them before his transplant takes place to reduce that risk as far as is possible.
This is all amazing to me. Not only are there so many issues to address – we all assume that ‘chemo’ means a drug (albeit a very toxic one) being administered – we have no idea of all the things that go on around it, before, during and after the treatment, but also, that there is so much knowledge and means to help with all the problems that might arise.
Gaurav starts one week of chemotherapy next Wednesday, all being well. This will completely suppress his immune system so that when new cells are put in to his body on T-day ( his transplant operation) 18 December, his body will not fight them. This is of course very scary as he will not have the resources to combat any infection during this time. He will be in an isolation room during this time and for up to eight weeks after the transplant. Gurprit will be staying with him throughout and I am lost in admiration for her courage in facing this.
Kiran and I will visit and while I will be allowed to go into the room, Kiran has to stay outside, see him through glass and talk to him via an intercom, again to reduce the risk of infection as much as possible. Confusing for her and scary for all of us.
You will I hope understand that we are spending as much time as we can in these last few days before the hospital stay starts as a family, doing normal family things while we have the opportunity. Our little family will be apart for a while and we don’t know how long it will be before it gets back to the usual routine.
We do plan to keep the blog going throughout the journey, but please forgive us if we don’t post for a while or as often – it is all new to us too and we have to see how things go.
But for now, Gaurav is his usual mischievous self – up to no good, as you can see!
I want to take this opportunity to say thanks again to everyone who has joined and helped the campaign – the awareness we have achieved will hopefully help others, like Rhiane.
If you haven’t already, please register – there are still so many waiting anxiously for donor matches. Give hope, give life, give a future.