Matt’s blog post transplant
Oh my god! When Dr Madi, the Consultant at Leicester told me that my Leukaemia had returned little did I realise that 10 months later I would still be recovering….…..when I came home from Leicester within 2 months my Hickman line was out and I was full time back at school!! I thought I would document my journey here BUT must emphasise that it is my journey……with stem cell transplants everyone’s journey to recovery is different, this is frustrating at the time because you want a time line or a person to compare to ….. but as you progress you become glad to be alive and deal with your individual issues. I have decided to document the ‘good bits’ I don’t believe that people want to read all the ‘bad bits’ BUT if anyone is on their journey and wish to ask anything please feel free to ask, if it helps you then I am willing to share……….….
6th October 2009 - Arrived at Birmingham Children’s Hospital Ward 15 for 6 days of chemo. Everyone is very nice and I am lucky to get a room to start my treatment, I think they are surprised to see how happy I am but I am still thrilled to have had a surprise visit to my house last night from Roger Wilson and the mad but lovely Linda Dawson.
11th October 2010 - My 15th Birthday today, not where I would choose to spend it………and they have moved me out of my room………..BUT we get out for lunch and drive for an hour to make sure I can have my rare steak at Frankie and Bennies……….well I can’t have rare cause my neutraphils (type of white cell measuring your immune system) count is lower than 1……..so I tease mum that I will open my bung on my hickman line and put some blood on the plate!!
12th October 2009 - Now we start the long wait for my blood counts to drop and rise and until they rise on their own I have to have numerous red blood and platelet transfusions. During October Mum sleeps with me on the ward and Dad stays at the Thistle Hotel just round the corner. Dad is not happy that my mates are not allowed to visit me on the ward due to the Swine Flu restrictions so he and the Staff nurse come to an agreement that I can go over to the Hotel to see them, so thankfully in the school hols Ben, Craig, Tom and Zac come up to visit, thanks to Mandy, Jason and Jo for bringing them all up over the 2 days. We also have visits on the ward from our friends Lin and Eric, Faye, Linda, Ben and Jo.
29th October 2009 - Had my first bone marrow aspirate to see how it is performing since the chemo at the beginning of the month.
30th October 2009 - Met Dr Velangi today, who kindly let me go off and see my mates at the hotel and was waiting when we came back with the bad news that the chemo had not worked I was not in remission, I have to get into remission to have the Bone marrow transplant.
5th November 2009 - Dad’s birthday and another bone marrow aspirate for me, by the afternoon the results reveal that I am still not in remission so another type of chemotherapy will be used on my second round. BUT the fantastic news is that a match has been found for me 2 umbilical cords that some wonderful mother has donated to ‘The Anthony Nolan Trust’ in Barcelona. We are discharged for the weekend to recharge our batteries as when we return on Monday it will be all systems go. My mate Jacob was straight round to cheer me up. Little did I understand at the time that within a week the Bone Marrow Team at Birmingham made things happen for ME.
9th November 2009 - Second round of chemo starts for the next 5 days, with a Bone Marrow Aspirate next Tuesday.
16th November 2009 - It has been decided that I will be having Total Body Irradiation TBI at the Queen Elizabeth Hospital in Birmingham. This morning Dan the radiotherapy man appears at my bed and does his best to make this sound like a fun trip twice a day next week. We also have everything explained to us by Trish – Bone Marrow Team – of the next stages to come.
17th November 2009 - Bone Marrow Aspirate first thing this morning while I am having platelets and vomiting not my best moment!! Then at 10.30am Sara Lawson appears at my bed with a big smile and Mum nearly has a breakdown but I now realise that that was the YES or NO moment for my transplant to go ahead Mum and Dad had been keeping that bit from me………………………………………… in the afternoon we drive over to Queen Elizabeth for me to be measured up for the TBI, 8 visits in all, I can sit still for 20 minutes but god that seat was hard and I had to wear only a T shirt.
24th November 2009 - Radiotherapy 8.30am and 3.30pm. At least we are getting out I suppose but the effects of the chemo and the infection I had over the weekend (rigors joy of joy) are not making this easy!! Although we did laugh when I was vomiting at 3am copious amounts of blackcurrant juice and the nurses who were doing my cultures looked at each other concerned it was blood but Mum put their minds at rest but we did all manage a smile of relief I think!!
1st December 2009 - Well I have had my 2 rounds of aggressive chemo, the umbilical cords have arrived at Birmingham, TBI, more chemo to keep me at this stable point, a day off yesterday from any medication at all and we have moved into a room in the High Dependancy Unit. It is Transplant day, day 0. I receive my stem cells into my hickman line from 2 little vials, the biggest anti climax and a strong taste of sweetcorn. Then for the next 3 weeks is the fun and games of being hooked up to loads of lines with medications going through continuously, feeding tube being replaced 10 times, cold baths every morning while the room is completely cleansed, daily red blood and platelet transfusions, infections, rigors, graft versus host, day time telly, doctors bad jokes, BOORRREEEEEDDDDDDOOOOOMMM!
20th December – Today I had a recorded message from my class 10J at school and in the post was some handmade decorations from them for the room, good timing as I am just out of isolation. So many things get me through this time:
We have a white board in the room to write things on – as paper is the biggest carrier of germs - we have chosen to record my blood counts and as they drop the number of donors being recruited through Matts Match are rising.
The Matts Match website is growing everyday with media interest, photos and messages of support.
All the staff in HDU and the Bone Marrow Team being so caring.
For all of us the support from Nain -Taid -Yalini -Sally -Jo- Mandy -Linda -Liz -Pasty- Jason and Mark is continuous…...
21st December 2009 - I am now being weaned off intravenous medications and Mum is being trained up to administer all my meds…………….and we are allowed out to the Ronald McDonald House which Dad has now moved into……….bit of a shock to our systems to walk outside and in the snow….my god its cold.
24th December 2009 - Christmas Eve we are all sleeping tonight at the Ronald McDonald House I am still not allowed to mix with people and luckily the top floor has not been allocated to any families yet so we are allowed to use the lounge and kitchen up there tomorrow.
25th December 2009 – Christmas Day, WoW! The Halliwells sent up a bumper bag of presents and there are some waiting in my HDU room.
29th December 2009 - Christmas Day onwards I go daily into HDU for check ups and transfusions and this morning we are told we can go home……….again don’t need to tell us twice we are off yeeeaaah!
31st December 2009 - Return to HDU to be discharged, poor Dr Velangi expects woops of delight but we are like “what about platelet transfusions”……he just said so confidently no more platelet transfusions now…..I’ve only got 30……. no problem just go home……….we were nervous but off we went and he was right!
4th January 2010 - Mmmm not so good today something not right Mum rings Birmingham and asks if we can go to Northampton for a check. We have to stay in and after 48 hours we are transferred to Birmingham by ambulance in case I have to have Blood Transfusion.
11th January 2010 - We have been discharged with the good news that cord 1 is 75% grafted and cord 2 is 25% grafted, no more of my old bone marrow remains……….that can only be good.
January - The rest of January I just slept we were warned that this would happen after TBI, weekly journeys to Birmingham every Thursday for Vigam, check ups and replacement medications from the BMT team. I was also now able to have my swine flu jabs! I had a Bone Marrow Aspirate which was thankfully clear. End of the month and I am 60 days post transplant.
February - At one of our weekly visits we were asked to try Interferon injections for 6 weeks in my legs to boost my immune system as they wanted me to have more GVH than I already had grrrrrrrrrr. And I’m having home tuition what's going on??? Now 89 days post transplant.
March - On 11th March - 100 days post transplant – I am told cord 1 is 100% grafted. The interferon injections have increased from 3 times a week to 5 days a week. I am now having them at home instead of going into Northampton General. The pain in my feet is now getting worse but I am going out to watch any Rugby Matches that I can so at least every weekend there is something to do and the Under 17’s have used the money that is left over from their tour to buy me an Xbox –Happy days!!
April - The pain is now doing my head in…………..everyday and at odd times……….the doctors are coming up with various remedies and mum has bought a tens machine which does help a bit. On the 29th I attend a Matts Match clinic at the University of Northampton, now we can see for ourselves all the hard work that goes on to hold one of these……..so rewarding. Some of my mates came from school to support me…………or was it to get out of an afternoon off school………..mmmmm who cares it was great to see them.
May - The beginning of the month was great Nain and Taid came up to stay and we went out and had a laugh. Then the rest of May was pain, pain and more pain and home tuition, home exams and weekly hospital visits to Birmingham…………
June - Went away to Nain and Taid's Caravan in Wales, pain is now easing but still won’t go away…..Dad took part in the Three Peaks Challenge………..well he drove one of the minibuses………he put in hours of practise with his left hand on an imaginary steering wheel and his right arm on an open door window. I had my 6 monthly Bone Marrow Aspirate the day before and the results were once again clear. Yay!
July - Dad has booked 3 days for me and him at Silverstone. I was in agony with my feet when we came home after the first day, Mum and Dad were going out for their first night out to the 3 Peaks Summer Ball and I had Jacob and Connor round for a sleepover. So in true fighting spirit I ignored the pain and……………..that was the last bad day…………….
27th July - Last visit today to Physiotherapist Andy Roberts, my feet have just continued to improve after every visit - cheers Andy - but I will miss the jokes!!
30th July - What a laugh! Went to see the Sevens at Franklins Gardens Dad and Kev Sanderson were on form and we had a chat with Dylan Hartley.
31st July - This morning our Season Tickets for the Saints came in the post …………looking forward to a fantastic season of watching Saints, Old Northamptonians and NSB matches, having a holiday and supporting the inspiring success of Matts Match.