The WORST Infection.. EVER!
That was a pretty good cliff hanger wasn’t it? Had you on the edge of your seat? Well I can tell you now that they let us go home. They took some blood from Hannah’s line to do some blood cultures and if anything grew then we’d have to come back in. When we finally made it home Hannah went to see Chesney straight away and gave him a massive hug. Afterwards she took Arnold, Ozzie and Barney for a lovely walk aboard Ronald with Mum, Dad and Sam. Once done everyone enjoyed a yummy tea but Hannah’s tummy was still unsettled from the chemotherapy and she felt unusually rough. Normally she is tired but not quite like this.
Hannah slept well though and had a lovely lie in until 9am. After a bit of breakfast and TV watching until 11 we ventured outside to watch Frank being schooled followed by Chesney being lunged for the first time in nearly 5 months! He was just amazing and behaved impeccably for Helen and Hannah was over the moon. Afterwards Hannah and Mum took Dad and Sam some lunch as they were combining and had a lovely picnic in the field. It was perfect. When they got home Hannah was so tired so slept for the afternoon until 6.15. Although she felt a little bit groggy when she woke up she was still keen to go to my parties that had been organised for that evening. One was called the Willberry Barn Bash and was being organised by Hannah’s best friend Charlotte and her friends whilst the other one was being organised by Hannah’s cousin Lucy in Clutton. So many amazing people supported both events and Hannah was very grateful to everyone for coming and supporting her in raising money for incredible charities. Luckily we managed to attend both parties so Hannah saw loads of friends and family as well as new supporters. It was a fantastic night.
We all slept amazingly well after all that partying but Hannah was still up bright and early to see Chesney being lunged again. Of course he was an angel! Afterwards Hannah had breakfast and had to go back to bed, as she felt really tired, until lunchtime. Tommy arrived after lunch to stay for a couple of days for Hannah to ride. They went for a lovely hack with Granny and he was just perfect as per usual! Later on we all went for tea at Granny’s which was nice but didn’t stay long as Hannah was absolutely zonked after her first ride in a while so we had an early night.
The next day radiotherapy was super early in the morning so Hannah, Dad and I left at 6.30 in the morning – thank goodness for that early night! Hannah also saw her psychologist Laura and they had a really good session talking about the way in which it was important for Hannah not to feel like she had to see visitors if she didn’t feel like it as often Hannah says yes when really I know all she feels like is a sleep as chemotherapy really knocks it out of you more than a lot of people know for. Hannah worries that if she says no people will be offended but it’s not that she doesn’t appreciate them wanting to see her she just really doesn’t feel well enough sometimes. Most of the time however Hannah loves to see everyone and hear what everyone has been up to (especially horsey people as they have the best stories!). On the journey home Hannah felt a bit poorly so had a long sleep when she got home (I could feel in the tip of my wonder pony nose that something just wasn’t quite right, usually this many days after chemo she wouldn’t still be sleeping in the day!). Millie came over to have a lesson with Helen on Tom and Hannah was so desperate to watch that Mum drove her down to the school in the car with her duvet on her. The plan had been for Hannah to have a mini lesson afterwards too but we all knew that she just wasn’t going to be up to it today.
Once again radiotherapy was pretty early in the morning so Hannah and Dad left at the crack of dawn. The blood results yesterday had shown that Hannah needed a platelet transfusion too so she had this afterwards. Even then she felt absolutely rubbish so came home and went to bed (this is so unlike Hannah 1. To sleep in the day and 2. To not want to ride Tommy who had stayed again overnight). When she woke up that afternoon and Mum found her temperature 38.7 degrees we were straight in the car and on our way to Bristol. Hannah had an infection.
Wednesday 12th August was our first full day back in the white room after 4 days at home. It wasn’t even like they’d been uplifting days to give Hannah a boost before coming back in as the poor thing had felt so poorly. Cancer is so not fair. They began antibiotics the night before and had taken blood for blood cultures to find out what had infected her. The antibiotics would be given 4 times a day with constant checks of her temperature and blood pressure. As the day went on Hannah’s temperature continued to rise and she felt more and more groggy. Even so she still had to go to radiotherapy which was starting to produce some seriously uncomfortable burns on the front of her tummy and round her back – so not nice.
Even after 24 hours of antibiotics Hannah’s temperature is continuing to go up which is a really bad sign and means the antibiotics just aren’t working. Her tummy has reacted badly to them and she is spending the most of her miserable day on the toilet. The stomach pains she developed before coming in was concerning the doctors so the head of radiotherapy came to see Hannah. She soon decided it was in Hannah’s best interest to stop radiotherapy for a short while to allow her sore tummy and bowels to recover.
Violet did her dressage at her first ever 1* at Hartpury International today. Hannah was devastated to miss it as that had been all she had been aiming to see for weeks and weeks and cancer had mucked that up again for her. Good job we are beating you then isn’t it! Back in hospital things are going from bad to worse. Hannah’s CRP (infection count which should be under 10) has shot through the roof confirming that the antibiotics aren’t working and is now at 400. The pains in her stomach are so severe she can no longer eat and food is not being absorbed at all, passing straight through her, so the doctors have decided to put Hannah on something called TPN which is basically a bag that is given IV containing everything Hannah would get from food if she was eating in the right balance such as fats, vitamins, minerals, proteins, etc. She really does feel totally awful.
On Saturday they changed Hannah to some new antibiotics especially as her temperature was still going up. This caused rigors where you feel exceedingly cold even though you are unbelievably hot so Hannah shivered uncontrollably for over half an hour. The contractions of her muscles so constantly made her ache all over and she was so scared as she had no control over her body what so ever. At this point her temperature was now 40.1 degrees so everyone just has their fingers crossed that these new antibiotics might work. The only positive of the day was that Violet did a super clear inside the time round a really tough track at Hartpury, Hannah was so unbelievably chuffed but just wished that she was the one that had been on board or at least been there to see it.
Finally Hannah felt a bit perkier on Sunday and Dad and Sam came to visit all day which put a smile on her face. Although her stomach was still incredibly sore and the antibiotics still weren’t agreeing with her Brigid came in to visit with videos of Violet at Hartpury which just made Hannah’s day. Violet had jumped a super clear showjumping on the final day resulting in her coming 27th out of 97 other competitors. We were all over the moon with her, what a cool mare! It was lovely for Hannah to see Brigid again too as it has been a while! That evening Sam wheeled Hannah to M&S for a change of scenery – my god was that an experience! Let’s just say Hannah really did hold onto her hat and Mum and Dad came running after!
Dr Cameron, who is in charge of radiotherapy came back to see Hannah on Monday to assess whether or not she was ready to restart radiotherapy again and she was pleased that her tummy felt less sore and angry so Hannah had her first session since Thursday that morning. The dietician was also pleased with Hannah’s eating progress – she could now manage a couple spoonful’s of potato (yum) but she was still to remain on the TPN. Although still feeling rubbish, her Grandma came to visit for the first time in a while which was really nice for Hannah. Just like every day before that Hannah had yet another platelet transfusion today as her blood counts are still unbelievably low. Bearing in mind you need over 50 to be operated on so there is less chance of you bleeding to death and Hannah has between 0 and 6 each morning, her need for them is pretty desperate and shows just how low a place her body is in right now. A really great friend called Ben whom she’d met on the ward a month or so ago popped in to say hello that afternoon and really perked her up. Ben has finished chemotherapy now and is waiting for a transplant and really is one of the most deserving people to beat his cancer so she has everything crossed for a successful operation in the near future.
Although we seemed to have a better day yesterday Hannah suffered serious stomach pains all through the night and into the early afternoon. After this she felt a little better so tried some more food which was a success and we were all hopeful we were seeing a light at the end of the tunnel. We had a couple of scans that afternoon too – an ultrasound and x-ray of her stomach and a long planned CT scan of her lungs to assess these tumours. We were all very nervous about the result of the third scan as this would give some idea as for whether the chemotherapy was working at all but all we could do was sit, wait and hope. Anything that could be done had been done so we just had to keep our fingers crossed.
The rest of the week and weekend was very similar to the start. Good bits and bad, some days far happier than others. Most nights were awful and Hannah was extremely tired from all the pain she has in her stomach. Quite simply she’s miserable. We’ve been here nearly two weeks, that’s the longest time ever that we have had to stay in hospital. The results of the lung CT scan was fairly positive. As her secondary cancer, so the one that is the result of the spreading of the cancer that is osteosarcoma in her pelvis, you don’t expect it to respond as well as the primary one to the chemotherapy. So, when Anthony, the consultant, said that the size of these tumours had not changed, it was still positive even though they had not got any smaller. We just hoped this meant that the primary cancer in Hannah’s pelvis had done the same or even better changed in a good way.
Finally on Tuesday they said Hannah could have a little trip out of hospital between her antibiotics so we all decided to have a trip to the cinema. Sam and Dad arrived at 11am to collect us for our trip to Avonmeads. First we had a trip to the shops and bought a few clothes while Sam precariously pushed Hannah and I in the wheelchair. Quite honestly they need to make the gaps between clothes rails wider else I get whisked away by hanging garments! A cheeky KFC and then we made it to the cinema to watch ‘Absolutely Anything’. It was a great film that made us all smile so ticked all the boxes in making us feel better after such an awful two weeks. Everyone even had an ice-cream when we left but I was sooooooo stuffed after a KFC, popcorn, sweets and a coke… I don’t know how they managed it! To make the day even better on return to the hospital we saw the doctor who gave Hannah the amazing news that she could finally go home. What a relief.
Her own bed has never felt so comfy as it did last night. We hadn’t completely escaped the hold of hospital though as we had to return that afternoon for yet another platelet transfusion and yet more radiotherapy treatment. Hannah had a lovely morning however watching Chesney and Frank being ridden by Helen so it wasn’t all bad and much better than being in there 24/7.
On Thursday Hannah came out with a plan that I think shocked us all. She wanted to ride Chesney. I could see Mums face turn white with shock. A 5 year old horse who has been on holiday for 4 months and ridden only twice since? A girl who is told she shouldn’t ride at all as her bones are so fragile they would break even if she were just to trip and fall on foot let alone from a horse? Of course Hannah being Hannah wasn’t going to take no for an answer and of course she had her way. Thankfully Chesney was a true ginger superstar and behaved impeccably whilst she clambered aboard precariously.
Not only did she walk and trot in the school but also went for a walk up through the village for his first hack! The grin on Hannah’s face said it all. She had her ginger pony back. I was so very proud of both of them and I know Mum and Dad were too even if it had given them both heart attacks! Afterwards we met Grandma in Bath and went for a trip round the shops in the wheelchair as Hannah was desperate for some clothes that didn’t rub her awful burns round her middle. These had become worse and worse as radiotherapy had progressed but we were so close to the finish line now. I honestly don’t know how she does it some days, even dresses are excruciatingly painful. We had a busy day as we went on to Bristol after our mini shopping trip for another platelet transfusion and her radiotherapy treatment. It’s a bloody tiring day when you are just out of hospital but most of it was really enjoyable for Hannah and to be honest all she wants to do is make the most of any time at home she has as it is so very rare. Today was supposed to be Hannah’s last radiotherapy but Dr Alison Cameron is keen to do three more. Hannah isn’t sure how she feels about this… pleased they want to treat her even more as obviously this is going to be more treatment for her cancer but scared as her burns are so sore just as her bowels are inside. Let’s just hope it’s worth it.
By Friday Hannah is super tired. It isn’t helping having to travel to Bristol and back every day. We had yet another radiotherapy treatment that morning, but a lovely hack with Granny on Archie and Hannah on Chesney that afternoon. It felt amazing for her to be back on board. The next day Mum and Hannah went to Southfield to fence judge at the pony club tetrathalon.
There were so many people there and everyone was thrilled to see Hannah out of hospital. It was so lovely to see everyone and we were so grateful for all the get well wishes. We could only stay for the morning as we needed to travel to Bristol again for a blood test that afternoon but
Hannah still managed to watch Millie and Tom storm around the cross country, most definitely their best round to date, which was so lovely to see. It really does take up so much time as a 3 hour round trip to Bristol before you’ve even had any treatment, time that is so precious for someone like Hannah who constantly seems to be in hospital and never at home. I really wish there was more I could do to help her.
We were back in Bristol again bright and early Sunday morning for another blood test and surprise surprise another platelet transfusion. Hannah has had 18 blood transfusions in the space of 3 weeks… That’s not normal. The chemotherapy is really beating up her body now and it’s not recovering in time for the chemo to start when it should. Treatment for this kind of cancer needs to be on time to consistently battle the disease so being already a week late to start isn’t good. Hannah was meant to start when she left hospital last Tuesday but the doctors felt it was only fair for her to have some time at home as she had been in so long and also her blood counts still weren’t stable enough to start either.
So its Hannah’s last day at home before chemotherapy is due to start tomorrow and Millie came with Tom for a hack. Hannah rode Tommy and Millie rode Chesney and they had a really fantastic time. Both ponies were perfect as per usual. Like normal, we had our daily trip to Bristol that afternoon for blood tests but didn’t have a transfusion as the doctors now really want Hannah’s platelets to bring themselves up. When we returned home Hannah had invited some family friends over for a Chinese takeaway before she was set to head back into hospital. The food was amazing and Hannah was so glad she chose to spend her last night at home with all the people she loved most. We are all set for chemotherapy tomorrow, mentally and physically. Bring. It. On.
Despite this being the worst infection Hannah has ever been faced with once again we’ve battled through together. Every single day I wish I could just take this awful disease straight away from her but instead we’ve got to do it the hard way and fight it. Don’t worry though, we won’t give up until we have #kickedcancersbutt.
Lots of love from Willberry x