About 70 children are diagnosed with Wilms Tumour in the UK every year.
StarGirl just before the diagnosis:
StarGirl being diagnosed came as quite a shock!
Having been born with a duplex kidney and other related problems, and being on kidney medicine (low dose antibiotics) every night from a few weeks old we already knew she had kidney problems.
She went through 2012 not having any infections, but as soon as 2013 came she started getting bouts of infections every few weeks, they were put down to uti/kidney related infections, and her daily antibiotic dose was slightly increased sometimes, but mainly she would be put on general antibiotics for a 5-7 day course and would get better.
During 2013 she had about 6/7 of these similar infections, so when Sunday, December 1st came and she got the symptoms I knew pretty much what would happen next.
A few days earlier the hospital had rung with a bladder operation date of Wednesday, December 18th, 2013 (to be admitted on the Tuesday 17th) she needed to be well for it, and they needed a urine sample 2 weeks before to check she was infection clear.
Monday, December 2nd, 2013. She picked up a bit but she wasn't great.
Tuesday, 3rd December, the day we were doing the urine sample for the operation, she woke with a 40 degree fever. My health visitor happened to be over that morning as she had heard about the op date, and wanted to see how she was. Appointments only usually last 30-40 minutes, she was over about 3.5 hours! During this time StarGirl went downhill pretty quickly, her fever wasn't lowering, the health visitor dropped the sample at the doctors (only around the corner) and came back, we gave her calpol, she was sick, we rang the doctors surgery and spoke to StarGirls doctor who gave us the medicine she always has when she gets these infections.
The health visitor left and went to pick up the prescription and went to the pharmacy for me. We gave StarGirl the antibiotics but she was going blue even in her nails, then she threw up over everything, all over me and just everywhere, meaning no medicine was in her system. The health visitor rang the doctors, and they referred us to a special children's unit in the hospital, they wanted to ring an ambulance, but I didn't want to stress StarGirl out any more than she was already.
We were packed and up the hospital an hour or so later, about noon.
It took hours to be seen, by this time the fever had increased, she had no medicine in her to make her better or reduce the fever, and the longer spent in a tiny waiting room with sick children wasn't helping.
We finally saw a nurse, then had to wait again to see a doctor, who prescribed stronger antibiotics (Co-Amoxiclav) and said we could go, we finally left a couple of hours later after a nurse ignoring doctors orders was reprimanded for locking us in a room when we'd already been discharged.
Antibiotics normally work on StarGirl within about 4 days, but this new medicine didn't seem to help. It was the middle of winter, and having to keep the heating off to make her more comfortable was getting worse by the day, she was just in her nappies, and I would be fully dressed with layers and layers of jumpers on and still shivering!! There was layers of damp on furniture as it was so cold in the house!
The medicine was finished on Sunday, 8th December, 2013.
On the Monday (9th December) I rang and cancelled her operation. I spoke at length with the nurse in charge who agreed she wasn't well enough, it wasn't an emergency operation, her daily medicine wasn't at the right dosage and that's probably how she got ill again and to up it etc. We had to do another urine sample to see how she was after the antibiotics.
Tuesday, 10th December, she still wasn't right.
Nor Wednesday.
I was switching phone companies at this point so my phone wasn't working, so my parents agreed to make an appointment at the doctors for Thursday morning.
Thursday 12th December, she had picked up a bit, she had actually eaten some breakfast and was a little cooler to be dressed to leave the house. At the doctors we saw a student nurse (yes very helpful when your child is very, very sick!) and she had no option but to get the doctor in. It was a different doctor to Stargirls normal one, who knows her best. He said there was nothing he could do, or give, and the urine sample from Monday had come back fine. We were welcome to take her to a&e but as far as he was concerned the fever would go on it's own and she was fine apart from that.
From Thursday night I didn't sleep, StarGirl wasn't right, I just knew it, I was checking her temperature all the time and it was staying high 38's to 40 degrees.
Sunday night I was exhausted, after only sleeping 9 hours in total since Thursday morning I was shattered and emotional, and I just wanted her better. I have quite a good medical knowledge but I wanted to know more, so I started googling fevers, effects of fevers and what happens when they last more than a few days. It was Sunday the 15th of December... Day 15. It had gone on long enough.
I got out of bed gone midnight (now Monday 16th morning) I'd only just gotten in, but I had to do something, and it couldn't wait until morning. I packed some bags, I dressed and I rang an ambulance.
I'm not sure how long the ambulance took but my parents managed to get out of bed after I rang them and get down to my house. StarGirl and I went in the ambulance and they followed. We went the scenic route to the hospital just with the lights on, they took a brief history of her problems, as usual they were awed by her medical history.
We got to a&e finally, and as they didn't have a bed we were put in an optical injury room with just enough room for 3 chairs huddled together, this was about 1am.
We just saw glimpses of nurses over the hours, then finally moved up to the children's admission ward (the one from December 3rd) at about 5am. StarGirl had a urine sample taken and threw up over everything again, luckily in front of a doctor so they for themselves could see how ill she was, her fever was going crazy again at this point. They did bloods, put cannula in and finally gave her some ibuprofen to bring the fever down a bit, then moved us into a room on the ward.
I managed to get about 20 minutes sleep and StarGirl was hooked up to iv fluids and antibiotics. The day was spent having regular iv antibiotic doses, she was sicky but was getting better slowly. They said she would be in 7-10 days on a course of iv antibiotics.
Tuesday, 17th December, 2013, was the strangest and gut wrenching day ever. She was perking up definitely, the medicine was starting to work finally!! It was the day she was meant to be admitted to the kidney hospital 50 miles away for her op if she hadn't have been so ill!
As it was Christmas and we were in a children's ward they have little events and guests. Today it was the turn of the Christmas Panto cast, this year being Peter Pan, so we had our pictures taken with loads of people including Jimmy Osmond dressed as Captain Hook!
An hour later the doctor said she was having a scan, so StarGirl and I went down to the scanning department. They scanned her kidneys and the man scanning her suddenly got upset and quite stressed trying to scan her, from his reaction I knew. I could see the lump in the duplex kidney myself on the screen, I knew it could be a number of things but from that moment I just knew.
I was in a daze going back up to the ward and then just broke down when we were back. I cried to the nurse and she went and put a flag on the information so that as soon as it was back the doctor would see it and talk to me.
It was hours later before he came to speak to me. He was a lovely doctor, but he had tears in his eyes so despite being told it could be anything, I just knew.
He'd spoken to Stargirls kidney doctor who wanted her up in his hospital as soon as possible, he wanted to do the cancelled op right away.
It took 3+ hours to get an ambulance to drive us the 50+ miles to the other hospital. We got there in an hour, the nurse we'd had for the last two days mainly trying to distract me away from the days events. She was a year older than me, and the paramedic a year younger than me, we talked about everything else other than what was currently happening.
We got to the hospital gone 7pm, they we winding down for the evening, and having seen the ward, well big massive sort of intensive care room not ward, I wanted to go home right then! StarGirl was allowed some food finally after being nil by mouth most of the day. She didn't want to go to sleep, and was so traumatised, she held onto my hand through the cot bars and wouldn't let go.
Wednesday, 18th December 2013, day of the cancelled op.
We saw the kidney surgeon, she had another scan done. The doctors came and said she was having the bladder op within a few hours. They did the planned operation, it went well, they said she had a horrendous infection though and that made it almost impossible to do, yet they'd managed to do what they'd need to.
They were certain the lump was an abscess, and that it should change over the coming few days under the iv antibiotics.
Friday 20th December, she had another scan, the lump was the same.
Saturday 21st December, we were allowed home on leave but needed to be back Sunday night, we left with oral antibiotics (Co-Amoxiclav yet again!)
Sunday night, 22nd December we returned.
Monday 23rd December, she was put under general anaesthetic for an MRI, it was meant to last about an hour, I went to pick her up after 50 minutes, and it was more than another 2 hours before she was a out. I was a wreck at this point, being consoled by a nurse.. Apparently there had been problems with the machine, but nobody had thought of telling me.
The doctors waited for the sonographer to write their results, but the sonographer just said they didn't want to write their results at this time...
That night she got pretty sick after the anaesthetic, and the only other person still on the ward (operations not scheduled for Christmas week) had horrendous flu.
Tuesday 24th December, Christmas Eve, we were allowed home in the night but needed to be back on Boxing Day. Sonographer still didn't want to post their results.
Wednesday 25th December, Christmas Day at home, we both woke with awful flu.
Boxing Day (Thusday 26th) we were worse, depleted immune systems from the last few weeks and exhaustion with flu on top isn't good.
I rang the ward explaining our illness to delay going back in a couple of days, they agreed, then 5/6 hours later the doctor rang back saying she wasn't allowed to make that call and to come back in straight away. Tough when it's 7/8pm, you don't drive, and the hospital is 50 miles away!
We got there around 9pm. They called doctors to come and see StarGirl as she was evidently unwell. They called some to see me too I was so ill. I've had pneumonia before and get very ill with colds let alone flu, and despite having taken all my medicines and inhalers I passed out from exhaustion and asthma and illness. I had a minute to warn them luckily and the ward was almost empty so they had a big bed for Stargirl and I to rest in all night.
StarGirl was so ill she screamed all night long. All. Night. Long.
They called doctors to the ward a few times as Stargirl was so unwell.
4:35am she finally fell asleep.
5:35am we woke up.
I moved her back to our previous cot and bed cubicle, she dozed on and off for a couple of hours. By the time the kidney surgeon came around I was tired and ill and so completely exhausted. StarGirl was meant to have a kidney biopsy (large needles going into her kidney from the outside to remove samples of the lump) she'd need anaesthetic.
When you're ill you aren't meant to have anaesthetic.
The kidney doctor took us into an office off the ward and said she was having the biopsy done, yes she was ill, but if it was cancer they couldn't wait for her flu to get better. I hadn't had any results of the previous scans or even the MRI at this point, so knowing they were serious about the lump despite still being sure it was an abscess didn't help my stress levels. They even said they'd spoken to oncology on Monday, I knew they wouldn't do that for no reason.
Sonographer still hadn't posted their results...
StarGirl was put under general anaesthetic again and given the biopsy.
That night we were put in a private room off the ward. I was so ill myself the nurses wanted to send me to a&e but I refused to leave Stargirl on her own in the middle of the night.
Saturday afternoon, December 28th we were allowed home. StarGirl was properly discharged from the operation ward and still on her antibiotics from the previous week.
I didn't get a call until gone 3pm the following Thursday (January 2nd)... 6 days later.
Thursday 2nd January, 2014, was hopefully the worst phone call I'll ever receive.
I knew. From the moment I picked up the phone I knew. Her kidney doctor was upset, but having known sort of for weeks I kept it together for the duration of the call.
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| Tumour in blue |
Wilms Tumour, after diagnosis:
Friday, 3rd January, 2014 was our first cancer clinic. We saw the oncologists, the nurses and then the ward.
Sunday 5th of January. She was admitted to the cancer ward.
Monday 6th they did a ct scan and ultrasound under sedation.
Tuesday 7th January she had a hickman line put in.
Wednesday 8th we were discharged. Finally off antibiotics!!!
Thursday 9th, the oncologist called and said they decided on her course of treatment and it would start in the morning.
Friday 10th January, chemotherapy session 1.
Saturday 11th January, Stargirl turned 2 years old!!
Friday 17th January, chemotherapy session 2. Told there was a possible cyst or lump in the other kidney.
Friday 24th January, chemotherapy session 3. Ultrasound on good kidney, 4mm little cyst and nothing to worry about. Tumour already shrinking.
Friday 31st January, chemotherapy session 4. StarGirl was sick outside hospital, then multiple times inside, sick from the radioactive dye for the ct scan, and then sick from the sedation. Wouldn't sedate, so injected with sedation, also didnt work. Ct scan done regardless. Back on antibiotics for infection in hickman line.
Monday 3rd February, doctor rang saying we're being admitted tomorrow, for kidney removal on Wednesday, 5th February.
Tuesday 4th February, admitted to the operation ward. Nil by mouth.
Wednesday 5th February, kidney and tumour removal. Nil by mouth. Nightmare day thanks to many failings in care and treatment, poor StarGirl :(
Thursday 6th February, nil by mouth.
Friday 7th February, nil by mouth.
Saturday 8th February, after 109 hours nil by mouth Stargirl was finally allowed to eat!!!
Sunday 9th February, still in hospital, eager to go after so many awful failings in care.
Monday 10th February, finally discharged after the kidney removal!!
Friday 14th February, clinic and surprisingly chemotherapy session 5 as she was so well.
Friday 21st February, chemotherapy session 6.
Friday 28th February, chemotherapy session 7.
Sunday 2nd March, admitted to the ward due to fever, put on iv antibiotics.
Monday 3rd March, discharged with more antibiotics, Co-Amoxiclav yet again!
Fever up and down all week long.
Friday 7th March, 2014, chemotherapy session 8. Final chemotherapy!!
Now classed as in remission.
After chemotherapy has ended:
Soon the first post-treatment clinic appointments will begin (every 6 weeks) and then scans and xrays every other appointment.
Now we just have to wait for the hickman line removal operation date!
Life with cancer:
After diagnosis life can be difficult, you are dealing with the emotions of the diagnosis, a vast and quick leap into serious medical knowledge and a sick child.
Read everything the hospital gives you, try and make your daily life as simple and routine as you can.
Always have your bags packed to leave at any time. Any time, day or night!!
During chemotherapy, anytime StarGirl got a fever over 37.5degrees with an underarm thermometer we had to ring the hospital, and then normally leave to go straight there.
Main parent won't really be able to work through the treatment so be prepared for lifestyle change.
StarGirl was still in nappies when she got ill, meaning that every nappy change or sick had to be cleaned up wearing gloves to stop the chemo coming in contact with my skin.
Chemotherapy suppresses immunity so you'll need to stay away from bugs and colds for the treatment.
Make sure you ask all the questions you have in your head, and that you know what to do when youre home and your child gets ill etc as different hospitals have different protocols.
StarGirl was 23 months when she got ill, it did affect her, and she did develop a lot of the chemotherapy side effects, we just dealt with them as they came. One of her chemotherapies affected her feet so we saw our usual physio and the hospital one too regularly. I had to be extra wary of her as she would fall over a lot, a lot!
Food became a major issue, not eating, not willing to eat, not liking her favourite meals, and swapping to very high calorie foods just to keep her ticking over. Most of the children and teenagers on the ward had a feeding tube, luckily StarGirl didnt need one in the end. The hospital gave me two booklets of what they are and arent allowed to eat during treatment.
Latch Wales Cancer Charity gave me a diary so I could keep track of her blood test results every week.
A nurse would come to the house every week to take blood before treatment, and to see how she was, side effects and the hickman/kidney dressings and healing.
StarGirl would be very tired straight after treatment, but that night would be unbelievable wide awake, our regular routine disappeared in early December and being in and out of hospital so much it was hard getting it back.
We managed to get it back and it has helped so much!!
Her sleeping routine changed and she now refuses to sleep in her cot, but after months of traumatic experiences, operations, treatment, illness and me being next to her in the hospital, its easy to see why she doesnt want to sleep alone in her own room anymore.
It has been emotional and tough some days, but we adapted and StarGirl is such a brave girl, such a fighter!!
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