Updates
Wednesday 14 October 2009
Today we received some of Sophie's results. Her MRI scan showed no evidence of disease, her bone scan (MIBG) showed no evidence of disease, her 1st bone marrow (aspirate) showed no evidence of disease. We are thoroughly happy for Sophie and hope and pray the awaited urine and bone marrow (core) biopsy is clear. We know only too well that most children with this disease go into to remission only to relapse, once relapsed there is no hope in the UK. Please keep praying and fundraising for Sophie as the fight is not over yet. But, living for today and today we are very very happy xxxxxxxxxxx
Tuesday 6 October 2009
Just a quickie update...
Sophie's MIBG scan (similiar to a bone scan) was clear. Sophie had to be sedated for this which was put down her tube which goes into her tummy. For this scan you have to lie completely still, hence the sedation. Because of Sophie chronic diarrhoea during part of the scan she had diarrhoea (caused by the sedation medicines they gave her). So although her scan was clear it showed uptake in her bowel. The doctors are convinced it was the diarrhoea and no cancer. So we are being positive and agreeing with them. Next she has an MRI scan this Thursday 8 October along with bone marrow biopsies which I pray are clear. Next is radiotherapy which is due to start on Mon 26/10. Sophie has remained as ok as she can be. She is eating a little which is fantastic, but still has to be fed by her special milk twice during the day and all through the night. Her medicines have reduced so she now has around 8 a day now. Things are heading in the right direction so please pray that her scan and biopsies are clear and please keep on supporting Sophie. xxxxxx
Thursday 17 September 2009
Well been home a week and its great to be back to a clean bed and to have a nice shower. Sophie has come on leaps and bounds with her walking. She is like a caged animal let loose. Remembering her being in bed for 3 months and not hardly walking to this is amazing. She is still not eating but has two 2 hour feeds of her special milk a day and then an overnight feed. She is still vomiting regularly despite being on 2 different kinds of antisickness medicine. She also has severe diarrhoea but its funny how you just get used to it. My washing machine is forever on!!! In herself Sophie is happy, she is much more settled and does not seem to be in pain. She is on around 20 odd medicines a day which will continue for at least a couple of months. So we don't get out much what with the medicines which have to be given at 6am, 8am, 12pm, 2pm then 6pm, 8pm and 10pm phew then the feeding attached to a drip stand you can't really go anywhere but I'm not complaining as I am so glad we are home and she needs to have all the medicines as her immune system is still not right and she also lost her spleen during her op which makes your immune system worse. We have a few scans/tests coming up which are always nervewracking and uncomfortable for Sophie. In the next couple of weeks she will have an MRI scan, a bone scan, bone marrow biopsies and a hearing tests, but for now we are happy and home and enjoying being a family again. Its my other little girls birthday tomorrow Jess who is 4. So we are looking forward to that. Keep supporting us. Sophie has been in Womans Own and Tyne Tees News are phoning next week, fingers crossed the money will come in.
Wednesday 9 September 2009
Dare I say it - WE MIGHT GO HOME TOMORROW!!! Sophie's doctor said if she tolerates her feeding tonight (her milk is fed into her via a machine through her tube which goes from her nose into her stomach) then we can go home. Sophie has not been home (barr a few days) for 3 months now. How nice this will be for her. She still takes around 20 medicines a day - yes 20! and has really bad diarrhoea but we can cope with that. She will love it and Jess will too. All togther again. The next plan is for Sophie to have scans and tests again in the next few weeks. She will have an MRI scan, a bone scan, bone marrow biopsies and a hearing test as the chemotherapy can affect your hearing. I pray everything will be clear, its such a nerve racking time getting the tests and then waiting for the results. She is pencilled in for radiotherapy for middle of October. She will have 3 weeks of radiotherapy every day under general anaesthetic. This should not be too bad with minimal side effects of vomiting and diarrhoea which Sophie has already!! Her growth could potentially be slowed because of the radiotherapy targeted to the spinal area, but if that's all we have to cope with that's fine. Better go its getting late and I'll have to be up bright and early if we are going home!!!!!!!! Once again as always thank you so much for supporting Sophie and please do keep doing so.xxxxxxx
Tuesday 1 September 2009
Good news and bad news today. Bad news is that Sophie turned a yellowish colour yesterday which has gotten worse, the doctors think it is down to one of her feeds she is on called TPN so they have stopped this today. I am scared though as I know full well when you go yellow it can be a sign of liver problems and Sophie's liver has been abnormal for a while now. She spiked a temperature yesterday and her blood is showing there is an infection again, so she is back on antibiotics. So we thought we would be going home sometime this week or next but it doesn't look like it now. But if she has to be there a little bit longer then so be it. Its the best place for her.
Good news is that we have raised around £25,000 so far and I know there is much more from sponsorship from Ben Nevis and the walk, and maybe the parachute jumpers, so it is all starting to add up. I have just found out that to get into Memorial Sloan Kettering Cancer Centre you firstly just need to pay a deposit of £200,000 - I KNOW its still a huge amount, but it's a lot better than £500,000 which obviously we would have to raise, but it gives us more time. If anyone has any great ideas for more fundraising please feel free to post on this group and I am sure lots of people would be up for it. At the moment I'm not able to, be as soon as I have a chance I will be in there with the fundraising! Thanks everyone who is supporting Sophie and helping us to get this farxxxxxxxx
Saturday 29 August 2009
Hi everyone, its Sophie's mum Karine,
Sorry I haven't updated for a while but high dose chemotherapy for Sophie has been very challenging. As you know Sophie suffered complications from surgery and has not really been "right" since. Her high dose chemotherapy was delayed more than 2 weeks as she had constant temperatures and her infection levels were extremely high. Eventually the doctors decided to start her high dose chemotherapy as they felt it was time and potentially the cancer could be there and causing a problem. Sophie had 3 different kinds of chemotherapy pumped into her veins 24 hours a day continuous for 4 days solid. 2 days after her last chemotherapy she had her own stem cells replaced to rescue her bone marrow. The time in between Sophie having no immune system and her new bone marrow growing was crucial. Any infection could be potentially fatal. The next week she went down pretty rapidly. She developed para flu and psuedomonous (? spelling) infection. Her temperature was always high (around 40 degrees) and she had sickness, diarrhoea and severe mucositis (severe ulceration from the mouth, down the throat into the stomach and down to the rectum (bottom). Sophie's doctors had her on every antibiotic known and constant high doses of Morphine. The chest physician took x-rays of Sophie's chest as her oxygen levels dropped and her heart rate was off the scale. She had a collapsed lung and lots of fluid on her chest. She scraped by intensive care twice just pulling through at the last minute. It was a really intense time for Sophie. Doctors kept telling me it was very early days and Sophie would get worse which I couldn't possibly imagine. Anyway, last Wednesday was the last "bad night" with Sophie again dropping her oxygen levels to around 85 and her heart rate was 240 (normal for her is 110 to 120) , her temperature was again 40 and woulnd't come down, the doctors gave her paracetamol and waited, eventually after 40 minutes Sophie started to get better. Sophie was given a medicine called GCSF which stimulates her blood cells to grow. Sophie has always responded well with this and once this was given for a couple of days Sophie started to pick up. Her blood counts doubled daily and her fighting cells came back with a vengence. They stopped her GCSF and told us her blood counts could drop BUT since then Sophie has maintained a brilliant bone barrow. You only have to look at her now to realise. Yesterday we were given the all clear that Sophie does not have any infection and is clear of para flu. She still has occasional temperatures but her spleen has died due to blood supply loss and doctors say that could be the cause of the occasional temperature. She came out of her hospital room for the first time in 6 weeks yesterday and with my hand walked to the playroom with her drip stand bless her. My husband stayed with her last night and said she was hyper until 12 am. Me, Jess and my mam are going soon to see her and I'm so excited as she is just getting so much better every day.
Thank you everyone for your supporting messages, and support towards fundraising in anyway, could I just ask if anyone has any more fundraising ideas and they need my help I am definately now more available to be hands on now that this horrendous stage is over, we are only 2% near the target for further treatment and really do need more help. I believe after everything Sophie has been through and came out the other end she DESERVES the best chance I can give her.
Monday 17th August
Hi everyone it's Sophie's Aunty writing this update as Karine is in hospital full time at the moment but she has asked me to pass on the following information:
Unfortunately Sophie is still not having a good time of it at the moment, infact she is extremely poorly. Doctors have been concerned about how ill she is over the past couple of days given that the normal "bad time" has not came yet, infact Karine has been told Sophie should only be getting really ill around the "day 10" mark and she is only on day 6! As a result they have been carrying out a lot of tests to indicate what the problem is. Sophie has now been diagnosed with Para flu. Apparently this flu would normally only last 2 days and not cause too many problems but because Sophie has no immunity due to her chemotherapy it is causing her to be very ill and is not clearing up. She has a lot of flem making her uncomfortable and is constantly complaining of a bad head (poor baby), aswell as many other symptoms that you would normally get with flu but exaggerated because of her lack of immunity. As if this is not enough, poor Sophie also has a very badly burnt bottom from the chemotherapy. So bad infact that doctors and nurses have commented that they have never seen such a bad case in any children before. Karine is waiting for burn specialists to come and see her to try and deal with this. Finally, Sophie's hair has fallen out again and she is now not talking unless she really has to. This is because she has mucisitus (no idea how you spell that!) which means she has ulsers running from her stomach all the way up into her mouth and covering her mouth entirely, which is extremely painful! Unfortunately, this is the reality of high dose chemotherapy and it is only going to get worse over the next week by all accounts!
As well as updating you on how Sophie is, Karine has also asked me to say a HUGE THANKYOU to everyone who has helped with Sophie's appeal in any way. Whether that be a donation and/or raising money through whatever means. She is so grateful for everything everyone has done to help, you have all helped to try and give Sophie the best chance of survival possible, which hopefully we will get her!
That's all Karine has asked me to say. So again thakyou to everyone who has supported Sophie's appeal and please keep going, we are doing well but still have a long way to go!
Rachel x (Sophie's Aunty)
Tuesday 28 July 2009
Friday was uneventful apart from the usual vomiting and diarrhoea which has become strangely normal for us now. She didn't have any temperatures but her cough was persistent. Saturday was another new challenging day with regards to her central line. Sophie has a aphoresis (not sure its the right spelling) line which is inserted through the neck and comes out in the chest. It comes out as 1 line but divides into two at the end. She has a red line and a blue line but they both lead to the same vein in the heart. So on Saturday I noticed (like a did back on Tuesday) that Sophie's cried whenever the nurse put something into her red line. It also started to bleed from the exit site (the part where the line goes into the skin). I made it known that I wasn't happy about this and wanted a doctor to look at it. So the doctor eventually came and said that he suspected there might be a puncture in the line inside her. So they had to test it. They hooked her up to some fluid to go into the red line and they were right. Sophie developed a huge swelling in her neck which meant that there definately was a leakage. I am so glad they realised this before any chemotherapy was given. The downside, she needed a new line put in which in itself is life threatening under the circumstances with the last general anaesthetic. I was told she would probably go straight to intensive care after this but they needed to do this asap. We thought it would go ahead on Sunday, but with the NHS Sunday is like a ghost town and the surgeons informed us that they needed an x-ray team on board as they might have to use the other side of the neck to insert it. So we waited. Monday Sophie had the operation and we expected the worst, she would be in intensive care on a ventilator. But in true Sophie style she was absolutely fine and when she woke she sat up and said "walk" and "bike". Sophie is famous for me and Atakan walking her up and down the childrens cancer unit attached to a drip on her bike or police car. The doctors were even amazed. I always thought I knew my daughter but hey even I was amazed. So the plan was to have an ultrasound in the morning. My husband phoned me this morning and said Sophie was vomiting and had diarrhoea quite bad so wasn't sure what to expect. Then it stopped and Sophie was fine??? Doctors were quite happy to send us home!!! OMG I was actually shocked! I am learning that things are so tempremental in cancer, even thought I worked for the Northern Centre for Cancer Treatment for 7 years?
So now that we are home there is no stopping sophie. Physiotherapists and doctors were concerned as Sophie wasn't walking or even standing without crying but I can honestly say we laughed so much as she was like a caged animal let loose. She walked back and forth for at least an hour, albeit she does have a slight twist from one of her legs. So as of today we are home (isolated - docs orders) but all together as a family again which we will enjoy until Sophie goes for high dose on Monday xxxxx
Friday 24 July 2009
Sorry haven't updated for a while but this week has been so challenging on a day to day basis. From Saturday we eventually got the results of the MIBG scsn (bone scan) which was NEGATIVE FOR DISEASE!! We got home on Tuesday night Sophie coughed and vomited her nasogastric (the tube in her nose) up and I had to make a dash along the A1 to the hospital for them to put another in. She hates this as you can imagine. Then on Wednesday we left Sophie and Jess with our good friend whilst we went to look for a double bed as we have family from my husbands side coming over to stay with us in preparation for the high dose (as much support as possible I say). When we got back my friend said Sophie had a bit of a temperature and was coughing, I immediately checked it and it was 38 degrees. So literally packed my overnight bag and took Sophie back to the hospital. They admitted her straight away. Her MRI was due Thursday morning but the docs were concerned about her going under general anaesthetic as she had a cough. They decided they would go ahead. I took her down as I normally hold her until she falls asleep and this time she looked like she was going to be sick when the anaesthetic went in. I was ushered out as usual so didn't think anything of it. The nurse came to tell me Sophie was awake and i thought everything had went ok. Not so. The anaesthetist said unfortunately Sophie had a reaction to the anaesthetic, her oxygen levels dropped and she started vomiting and produced lots of secretions so he immediately brought her back round and the MRI was abandoned. I was so upset until we got back to the ward and Sophie woke up and gave me the cheekiest smiles I have ever seen. After that she was absolutely fine. I couldn't believe it!. Since then the docs are concerned that she has this cough and putting her into high dose on Monday probably won't go ahead. They will take it day by day but she is still coughing as of now. The doctors successfully managed to sedate (sleeping medicines through her nasogastric tube) today and got a CT scan which was great news. They desperately need a scan so that they can look at the changes since surgery and also have a baseline scan to compare with future scans after high dose chemotherapy. The doctor came to speak to me tonight and told me that Sophie's spleen had been affected. At some point the blood flood to the spleen had been damaged. It will correct itself but as yet it hasn't. Her liver still looks abnormal but they think it is just from the effects of chemotherapy and nothing else. The place where the tumour was has swelling but the doctors are confident it is surgery related and not residual tumour (tumour left behind). So good news and bad news alround. So here we are stuck in hospital until Monday when she will have an ultrasound to look at the spleen again and they will decide whether she goes ahead with high dose. Prayers are needed that she will heal and everything what has happened is meant to be and in time she will get there.xxxxxx
Saturday 18 July 2009
Sophie had a bad night on Friday with high temperatures of 39 with shivers and blue lips. They gave her calpol but she just vomited it up. The docs gave her immediate calpol through her central line and put her on a drip. She stablised 2 hours later. I was like a paranoid mum last night, checking her temperature everytime I woke up. She did have a few spikes (38.6 and39) through the night. I changed again 17 nappies but managed to not have to change the bed !!! Today the docs changed Sophie antibiotics and gave her a blood transfusion and you would not believe the difference in her. OMG she is soooo different, in a good way. She is crying to go for a walk, rather then just sleeping, she wants to draw, watch mickey mouse etc. All good signs. We will find out the results of the tests on Monday or Tuesday if its viral or if she is positive for neuroblastoma cancer. I honestly feel its viral. Prayers are needed. xxxxxx
Thursday 16 July 2009
wow today has been an absolute nightmare. Sophie's high dose chemotherapy is cancelled. She is too unwell. She has been sick, diarrhoead and everything else on me today. Her temperature is around 39 ish but the nurses won't treat until she spike another temperature again. I hate seeing her this ill. I know logically that it can be a simple virus that most children pick up and it can go on its own but inside as a mum (and as I have been told) it can be the neuroblastoma rearing its ugly head. Please pray for her she really is so poorly at the moment xxxxxxxxxxxxxxx
Monday 13 July 2009
Well as usual with cancer all didn't go as planned today. I thought we would be in for a simple blood transfusion and waited and waited, maybe 3 hours later, nurse came and said sophie's hb was 8.8 and they normally don't give transfusion unless it's 8. I said I want Sophie to see a doctor as I am not happy with the way she is (mothers instinct). So as in usual Karine style I picked the person I knew would help me and said that Sophie needed to see a doctor immediately as she had a temp and now I feel she does and is not moving etc. So 4 doctors later Sophie is now back in hospital and her CRP (indication of infection) is 250, normal is 10, doctors do not know where the infection is from but clearly need to know. It could be anything from viral to cancer. Please pray its not cancer. I believe in my heart its not as she has had a clear bone scan last week. Feel free to commentxxxxx
Sunday 12 July 2009
Sorry haven't updated. The last few days have been very challenging. Sophie is only allowed a special diet because of the damage they did during her operation. She developed too much fluid in her tummy from her lymphatic system (the bit that breaks down fat) and now she can only have 0.6g of fat a day. This is so hard as her sister Jess is obviously wanting the normal things a 3 year old does, biscuits, chocolate. We are now trying to teach Jess to hide her food but she doesn't understand bless her! Sophie still has a lot of pain and is now needs a blood transfusion tomorrow. 1 week tomorrow and the biggie is coming, the high dose chemotherapy, this is given at such high doses for 24 hours for 4 days continuous aimed to wipe her whole immune system out. She had her stem cells (baby blood cells that can potentially mature into any cell e.g hb, neutrophils etc) collected before her surgery and they will put them back into her on the 5th day (I think) after her chemotherapy finishes. The time between the chemotherapy immune system wipeout and waiting for the stem cells to mature is the trying time. She will probably be in intensive care again at some point. I am not looking forward to this BUT she has to have it as the cancer was in her bone marrow and we want this out. Please pray for her at this time next week. On the bright side we are gonna try and do some normal things this week weather forbidding. Going to the park, beach. Hope everyone is well. Karinexxxxxx
Wednesday 8 July 2009
Sophie was allowed home last night - I had to fight my way through the different doctors but was adament to get her home. She is just so happier here. Today Sophie has had her teeth checked - this has to be done before high dose chemotherapy so check if changes have happened afterwards, bless her she is still teething. She has also been for a hearing test as the chemotherapy she has had and will be having can cause hearing loss. We have popped home for a couple of hours and am back off to the hospital as Sophie has to be sedated and then have her MIBG scan. I pray there is no progressive disease. Sophies big sis has gone off to edinburgh with my mam and I MISS HER BIG TIME - LOVE YOU LITTLE GIRL (although she is still only 3 and my baby she insists she is a big girl. Keep checking the group on Sophie progress, Karine xxxxx
Tuesday 7 July 2009
Sophie's scan showed she had no qykle fluid in her tummy which is fantastic news. Surgeons expected she would still have some. She is goind to have a radioactive dye put into her tube today to prepare for an MIBG scan (similar to a bone scan), this is very important test as it shows up any active neuroblastoma cells potentially in the body. Sophie's was negative last time so lets hope it remains that way. She will have the scan tomorrow. Karinexxx
Monday 6 July 2009
Sophie is doing so well today. She is on special kind of milk and is now allowed to eat certain foods. Her lymphatic system has been damaged during her op so she is allowed to eat certain foods containing no fat. Hoepfully this will sort itself out so this is just temporary. Sophie has been her usual smiley self the past couple of days which is great. I am a bit worried about her right leg as she seems to have difficulty moving it and cries when trying to walk but Surgeons have said it could be temporary so hopefully it is. Irrelevant though if it means she can get cured of her cancer. Sophie will have a CT scan today under general anaesthetic to see how much fluid is left in her tummy and to see the tumour that was left in and see if there is any scar tissue etc. I pray it will all be ok. I had a bit of a bad day yesterday but am back in fighting mode big time for Sophie this morning and feeling soooo POSITIVE!! Thanks for all the support everyone, Karine xxxxxx
Saturday 4 July 2009
Sophie is doing so much better. For the first time in the past 2 weeks she was able to come off all her lines attached to her central line (a line that goes into one of the veins in the heart) and we could take her outside for a walk. She was even allowed to have an ice lolly. It was a beautiful sunny day and we took her to the local park opposite the hospital and she loved the ducks and swans. It was a fab day and she cried when she had to be put back onto her lines bless her, she kept saying "buggy" "walk". Doctors are very pleased with Sophies progress and anticipate her high dose chemotherapy will be 2 weeks on Monday. Hopefully we can get home for at least a few days to enjoy time as a normal family before the next hurdle begins. I will download some pictures taken from our day out (well 2 hours lol) at the park. Thanks for your support everyone
Quick update - will put dates on from now on
Tuesday 30 June 2009
Sophie on the mend. She has been started on a special based milk which she will receive from her tube through her nose which goes directly to her stomach. So far so good and she is managing to keep it down, although too far down as the nappy changing is getting beyond a joke. She is asking for water now which is a great sign as she started to refuse it again last couple of days, she calls it Motor and its sooo cute. Feeling more positive today/night - please keep the support up, can't believe the group is now over 2000. I have also been informed from a family in the hospital in New York that as well as the immunotherapy , the doctors now have the go ahead of giving vaccine (injection) they have produced to help prevent relapse wow. Again not available in the UK!!! and more than likely quite expensive. I have been told the huge costs for these treatments in New York mostly go back into research to find the ultimate cure for neuroblastoma. Sophie could only but benefit from this. Please keep supporting us, karine xxxxxxxxxxxxxxxxxxxxx
June 2009
We have been told surgeons removed 95% of tumour, pathology results were 90% dead 10% active neuroblastoma cells. As I am very much aware it takes just 1 cell to reproduce and eventually kill the child. This news makes me more determined as to why sophie needs further extensive treatment. xxxx
June 2009
Sophie is now out of intensive care and is so much better. Her tummy has reduced by half. She stilll has a way to go and the doctors recon she will be in hospital for a further 2 weeks (second home for us). She is not to have any food or drink and I feel so sad when she asks me for water or chocolate. On the upside its all going in the right direction. Please keep promoting this group and her appeal please everyone, she has loads more treatment to go through and has been through so much already she needs that extra chance of survival. Thanks for all your support - Karine, Sophie's mum
June 2009
At last some good news! Sophie does not need an operation - how many times can different doctors change their minds! She is still in intensive care but have had 3 smiles and lots of giggling with her new peppa pig toy. Tests have proved she has qykle ascitis, where lymphatic fluids leak into the tummy. Her tummy originally was 26 cm but is now 23 cm - yeah!! She is still poorly but I am so grateful things are now off in the right direction. Doctors think it will take at least 2 weeks for her body to absorb the fluid in her tummy. More time to raise money for her treatment is what I say - thanks everyone for your support so far, words cannot express how grateful I am that there are people out there that genuinely care, love Karine, Sophies mam xx
15 June 2009 .....
Sophie received her operation to remove as much of the primary tumour as possible on 15 June 2009. The op lasted approximately 7 hours and Sophie was put straight into intensive care. Sophie developed complications whilst in intensive care. The intensive care doctors noticed that Sophie was very sleepy and not waking a lot. The carried out some blood tests which revealed problems with her liver and kidneys. The relevant doctors who treat the liver and kidneys were called and Sophie was given medicine which made her improve steadily. We were then discharged back to the surgical ward. Sophie was very swollen after her operation which were told was normal. After a day or so the doctors weren't happy with Sophie's swollen tummy as the rest of the swelling had gone down. She was in so much pain and was referred straight back to intensive care. The doctors had Sophie on Morphine and Ketamine which helped with her pain. They carried out a series of tests and we were warned that Sophie may need another operation as she could have a bowel obstruction.
