Wednesday, 30 December 2009

A Very Merry Christmas

Ellen had a wonderful Christmas. She really perked up the few days leading up to Christmas and was miraculously well. She enjoyed Father Christmas' arrival (although she realised it was her Uncle Will almost immediately) and had a fabulous time opening all her presents. She has now started her second round of immunotherapy treatment and is so far coping very well. We are due to go into hospital on 4th Jan for a new Hickman Line (the current line only has one lumen and she needs two); this will be followed by five days of antibody treatment.

Wednesday, 23 December 2009

Much Better

Ellen has been really well over the last few days. She is back to her normal self and is really looking forward to Christmas. Fingers crossed she remains well.

Monday, 21 December 2009

Slow recovery

Ellen has been slowly recovering from her immunotherapy which has taken longer than we had hoped. She has lost a lot of weight and is really tired, but is starting to feel a bit better despite a number of episodes of being quite angry.....which is understandable! We have been getting ready for Christmas with the hope that Ellen will be well enough to enjoy it and trying not to think about the next round of treatment.

Tuesday, 15 December 2009

Round one done

Ellen is back home. It has been a pretty horrendous few weeks. Her stay in ITU was not too complicated and we are hoping that the next cycle of treatment will be on the regular ward. Ellen did however feel dreadful throughout with sickness, temperatures above 40 degrees, 'flu-like' symptoms and leg pains from her injections. She is in reasonable spirits today but very tired. We have been told that these side effects should wear off this week.

Tuesday, 8 December 2009

A Suprise - Anti-GD2

Ellen has started a new form of immunotherapy treatment. This is quite complicated and has come as quite a shock to us all. She is very well, the change in treatment is due to a national change in 'protocol'. She is the first child in the UK to receive the treatment and as such we are surrounded by much anxiety. The treatment aims to mount an immune response to any remaining cancer cells. It has been used in the States and parts of Europe and been shown in preliminary studies to be pretty effective. However, as is predictable it is not without its side effects. From last Wednesday Ellen was given a daily injection of IL-2 for five days. This caused her to be reasonably unwell with fever, flu-like symptoms and horrible local reactions at the injection site. Yesterday morning Ellen started a five day course of Anti-GD2, an infusion given over an eight hour period. Ellen will be on ITU for the period of the treatment due to the potential side effects (mainly intractable pain). Anti-GD2 and IL-2 will be given on five separate occasions and it is due to finish in mid-April. Ellen is doing OK this morning but is pretty knocked off on a morphine infusion.

It has been very difficult coming to terms with the fact that Ellen will again be made to be unwell as we all felt that we had made it through the 'tough' bit of her treatment. We are all trying to focus on the potential benefit of the therapy and hoping that she will cope with the next few months. Sadly the battle has re-commenced!

Apologies for not mentioning this earlier. We have been sworn to secrecy until news of the clinical trial was announced this morning. Various related press releases below:

Monday, 30 November 2009

Round one done

Ellen has nearly completed her first course of Retinoic Acid. She has had very few side effects with only a bit of dry skin. She is very well, talking more and more and getting much stronger. We have had no problems with her new Hickman line however, she did manage to pull her nose tube out in a rather full lift much to the suprise of our fellow passengers!

Wednesday, 18 November 2009

New Hickman Line

Ellen's new Hickman line was put in yesterday morning. It was all very straight forward. Lets hope it stays in this time! We have started the Retinoic acid this morning for two weeks. Ellen is still enjoying life and is already looking forward to Christmas....

Wednesday, 11 November 2009

Retinoic acid

Ellen is doing really well. She has been enjoying her new found freedom without her Hickman line. Sadly she is having another one put in on Tuesday. She will then start her Retinoic acid. This will be twice a day for two weeks followed by a two week break for six cycles. We will give this at home so hopefully no need to stay in hospital! The main side effect will be dry and pealing skin mainly on the face. We have been assured that this will not hurt her but will look somewhat unsightly. It is lucky Ellen is so little and will hopefully not care.

Wednesday, 4 November 2009

Just waiting..

Ellen has recovered well from the radiotherapy. She has been a bit tired and had some rather impressive tantrums but is eating well and continuing to put weight on. We are now just waiting to find out when her retinoic acid will start. We have been given a few weeks off so we are making the most of it. We went away for the weekend with a group of friends and are off to Dorset for a mini holiday tonight. Unfortunately Ellen managed to pull her Hickman line out this weekend. This was a bit of a shock and resulted in a rather rapid drive to the hospital but thankfully no harm was done. However, Ellen now has to have another one put in; yet another general anaesthetic!

Monday, 26 October 2009

The rather huge radiotherapy machine

Well done Ellen!

We have finished the radiotherapy - phew. Ellen is still really well, bouncing with energy and generally enjoying life. We now have a few weeks off before she starts oral retinoic acid. This will be given for 2 weeks followed by a two week break for the next six months. The side effects of this treatment are thank-fully fairly mild with dry skin being the main concern.

Friday, 23 October 2009

Nearly done

Well we only have one session of radiotherapy left. Ellen has been tremendous over the past few weeks. Despite being lugged out of bed to a cold car every morning having been starved all night/morning and then being put to sleep and irradiated for 15 minutes Ellen has actually enjoyed herself!!! This is a great tribute not only to Ellen but also to the wonderful staff who have looked after her so well.

Friday, 16 October 2009

Half way...

Well actually just over half way. Ellen has now had 9 anaesthetics in 11 days! She is doing fine if a bit tired. We have got into a good routine which involves Ellen running all the way through the hospital to the radiotherapy department (dodging the many passersby). When she arrives she scares the Anaesthatist with her lion impression and is promptly put to sleep with the 'white stuff' whilst sat on on my knee. The treatment then takes about 15 mins. Only six sessions left.....

Friday, 9 October 2009

Week one

Ellen has a new Hickman line. She has sailed through this weeks radiotherapy. Four anaesthetics done, eleven to go...

Sunday, 4 October 2009

No news

Ellen has been fine all week. Her IV antibiotics were stopped on Wednesday which meant that the lines in her feet could be removed. The rest of the week has been spent chasing her around. She is in very good spirits and certainly the best she has been since she came home from her Bone Marrow Transplant. This week involves a new Hickman line placement on Tuesday and then radiotherapy from Wednesday.....

The photos are from a very enjoyable visit to Woburn Safari Park.

Sunday, 27 September 2009

Feeling Better

Ellen is feeling much better. She has not had a temperature since Wednesday morning and is in very good spirits. We are still in hospital having IV antibiotics but hope to be allowed home this evening. Ellen will be having a new line put in on the 6th October and then her radiotherapy will begin on the 7th October. So, after a rather frightening evening we have only been set back by a few days....

Wednesday, 23 September 2009


Ellen had a rather unexpected visit to ITU last night. She had been a little tired over the weekend so we went to the peadiatric day unit yesterday morning for a blood test. This was taken from her Hickman line. Two hours later Ellen was very unwell with a high fever and rigors. Her pulse rate was very high and she was having to work really hard to fight against the infection coming from her line. She was quickly whisked to theatre and her Hickman line was removed. She then slept over night on ITU and we are now back on the regular ward. Ellen is doing fine today but we will be here for the next few days for IV antibiotics followed by the insertion of a new line in time for radiotherapy! On a positive note Ellen scans are clear.

Tuesday, 15 September 2009


Ellen has had a good few days. She has been on her first bike ride (she was pulled behind Daddy's bike in her new trailer) and had her first day at nursery school. We have, however, also been in hospital having lots of scan and today had her radiotherapy planning scan. All these have involved Ellen having either oral sedation or a general anaesthetic which always proves challenging as she is unable to eat or drink for six hours before the scan and when she comes round is like a drunk teenager (either giggling or falling over!). We have two more scans this week and then two weeks off before radiotherapy begins on Monday 5th October. This will involve 14 morning sessions of radiotherapy with a general anaesthetic. A very daunting prospect.......

Saturday, 5 September 2009

No news

Ellen is fine. She has put on half a kilo and is now almost running! We have a CT and MIBG scan next week. Due to Ellen's age and rather feisty nature she will have a general anaesthetic for this which is always quite a challenge! We hope her radiotherapy will then begin at the end of September. This will involve 10-14 blasts on consecutive days. This will again need a general anaesthetic each time but we will thankfully not have to stay the night in hospital.

Monday, 24 August 2009

Week at home

Ellen is doing fine. We have spent a lovely week at home. Ellen has gone from strength to strength. She is now walking (after five weeks of being bed bound) and is eating really well. It is a real joy to see her getting back to normal!

Monday, 17 August 2009


Well, after 43 days in our little hospital room we are now home! We are all exhausted. Ellen now has a month recovery (and fun) before the radiotherapy begins. Thanks again for everyone's support.

Friday, 14 August 2009

Day 40 - a great day

After much pleading, Ellen was allowed home for a few hours today. We set off at midday and pushed her home in her buggy along the fields. To Ellen's delight we saw two horses and some cows on the way. We had a great time at home and even ventured out to feed the ducks. We are back at the hospital now and anticipate being home much of Saturday and Sunday with a final discharge date of Monday (Day 43!!).

Wednesday, 12 August 2009

Day 38

Ellen is doing fine. She is a great deal brighter. We have managed to play lots of games and spent much time walking around the hospital grounds. Ellen has also put a sterling effort into being allowed home. She asks a member of staff at any given opportunity and even tried to bribe her consultant by blowing him a kiss this afternoon. It has eventually worked as we hope to be allowed home for a few hours over the next few days with the aim of going home by Tuesday.

Monday, 10 August 2009

Day 36 - feeling much better

After a weekend of mainly sleep and the occasional walk off the ward Ellen is feeling much better. We now need to get her up walking and eating. Lets hope we will be home soon .......

Friday, 7 August 2009

Day 33 - a very special day

Ellen is doing really well. For the first time today our consultant said he was very pleased with her progress. Her liver is much smaller and she is beginning to lose all the excess fluid she has retained. We made it off the ward this afternoon and went to the hospital coffee shop. Ellen managed to eat a bit of sandwich which was an amazing sight. She was then laughing and joking like the real Ellen we know and love. We even went up to the top floor of the hospital in the lift to look out at the outside world. It was a wonderful moment and a real sign that Ellen is getting better. We would like to thank everyone for their messages of support and prayers which have helped us through this very difficult time.

Wednesday, 5 August 2009

Day 31

Ellen is a bit better today. Her white cell count has come up and her liver is improving. She has been much brighter and even laughed this afternoon. We hope that we will be out of isolation this weekend and if her morphine pump has been turned off we will be able to take her for a walk around the hospital grounds. Small steps but a definite improvement.

Monday, 3 August 2009

Day 29

Ellen is doing OK. The doctors are pleased that her liver is recovering and that her white cell count is starting to come up. They feel that she is over the critical period and is no longer considered high risk. Ellen, however, is not so pleased. She has been terribly uncomfortable today as her abdomen has become more swollen. This appears to be due to the fact that over the past few days she has been given too much fluid. The doctors have given her more diuretics to help her wee some of the fluid off which has helped. Whilst it is obviously a relief that Ellen's condition is improving, it is terribly distressing to see her so uncomfortable and quiet. We have been told that it will take at least ten days before she is feeling better.

Saturday, 1 August 2009

Day 27

Ellen is a bit better. Her liver is starting to recover and the doctors are happy with her progress. Her abdomen is still very swollen and uncomfortable. She remains on morphine. Ellen does seem brighter and has been asking to go home; she even insisted on getting dressed this morning so as to try and persuade the consultant (unsuccessfully!) that she is well enough to be released. This is the start of a slow recovery but we hope that she is now through the worst of it.

Friday, 31 July 2009

Day 26

After a long night Ellen is stable. Her blood tests suggest that her liver is working better. Her abdomen is still very swollen but her liver is no bigger. She is still pretty miserable but appears more comfortable. Her temperature is still grumbling so she is having a chest CT this morning. Her white cell count is creeping up so she may even be out of isolation by the end of the weekend!!

Thursday, 30 July 2009

Day 25

Ellen has deteriorated today. Her weight has gone up and her abdomen is more swollen. We are anxiously awaiting how she does over the next few hours.

Wednesday, 29 July 2009

Day 24

After an anxious 24 hours Ellen's condition is stable. Her liver is still very big but the fluid in her abdomen has reduced slightly and her weight has remained the same, both of which are encouraging signs. She has also had a blood and platelet transfusion today and is still being very closely monitored. She has been pretty miserable today and has slept a lot. As ever, the waiting continues.

Tuesday, 28 July 2009


There is currently no government funding for neuroblastoma research. This is a petition set up by another family requesting that the government start providing some! Please will you sign and pass on as you feel appropriate. Thanks

Day 23 - veno-occlusive disease

Ellen has been worse today. She has unfortunately developed the dreaded veno-occlusive disease (VOD). This has happened because the high dose chemotherapy has damaged her liver. As a consequence her liver and spleen are enlarged and she is retaining fluid on her abdomen. This happens in over 50% of children who have a bone marrow transplant. It can be either mild/moderate and treatable or severe and fatal. At present the doctors feel that she has mild VOD. She has been very sleepy today and obviously feels rotten. She is currently being treated with a whole hoard of medications and being closely monitored. We can only hope she improves over the next few days.

Monday, 27 July 2009

Day 22

Ellen has had a bad day today. Her bone marrow has taken a hit and, as such, all her counts were very low this morning (Hb 6.6, WCC O.6, Neut 0.06, Plt 8! for the medics). She has had a constant nose bleed which looks far worse than it is. On top of all this Ellen was given too much fluid over the past 24 hours so was very bloated and found it difficult to breath when she woke up. She was slightly brighter after a blood transfusion, two platelet transfusions and two lots of frusemide (a diuretic to help her wee off all the extra fluid). We are just hoping that this is not the start of a down turn and that she is better in the morning!

Sunday, 26 July 2009

Day 21

Ellen has been a bit better over the weekend. Her temperature has settled and she has managed to drink some water and milk. She is however somewhat annoyed with being stuck in this room with her drip pumps that beep every five minutes. She has taken to shouting at us to 'call the nurse' whenever her machine beeps. When the nurses arrive Ellen gives them a rather stern look. The consultant was even told on the ward round today - 'doctor you are in the way MOVE'. The general consensus is that this behavior signifies that Ellen is feeling a lot better but is not feeling totally right. Ellen is still being very closely monitored and we are certainly not 'out of the woods' yet.

Friday, 24 July 2009

Day 19

Ellen is slightly better. She is talking more and even sat up to have a game of 'greedy gorilla' yesterday. She is, however, still on morphine and has a grumbling temperature. If this does not settle over the weekend she will need to have a CT scan to look for a possible fungal chest infection. We are still waiting anxiously for signs of the dreaded VOD, for which we still have a few weeks of the 'high risk' period left.

Wednesday, 22 July 2009

Day 17

Ellen remains the same. She is still suffering with mucusitis and she has had to have an increase in her morphine. Other than one smile and a half laugh yesterday Ellen is very quiet and still sleeping a lot. The doctors seem satisfied that all is on track. The wait continues...

Monday, 20 July 2009

Day 15

Ellen is still suffering from the high dose chemotherapy. She has only managed to utter three words today - 'leave me alone'. She has had a platelet transfusion and has been sleeping a lot which means her pain is better controlled. The next 21 days are really critical for Ellen as she is at risk both from infection and from a serious complication of the chemotherapy called veno-occlusive disease. The doctors are happy with her progress but things could change at any moment. We are taking it day by day.

Saturday, 18 July 2009

Day 13

High dose chemotherapy is nasty, nasty, nasty. Ellen has been feeling well and truly rotten today. Her mucositis is getting worse. She has been pretty sick and has stopped eating and drinking all together. Her pain is being controlled with a morphine infusion which is certainly helping. We are still being assured that this is what to expect at this stage....

Friday, 17 July 2009

Day 12

Ellen has had a difficult day today. The high dose chemo has caused the inevitable side effect of mucositis - mouth/gut ulcers. These have given her enough pain to require morphine. However, in true Ellen style when the pain had settled she has had bouts of laughing and playing.

The photo attached is of Ellen's new best friend Archie (Grandmum and Grandads new puppy) - she asks how he is everyday (he is obviously missing her as much as she is missing him).

Wednesday, 15 July 2009

Day 10 - isolation begins

We are now 'in isolation'. Ellen is not neutropenic but due to the Swine flue risk we have been isolated 'just to be on the safe side'. There is apparently no need to panic and in all honesty we are probably in the safest place possible at the moment. That said we still hold our breath as we pass through the hospital concourse and have completely banned visits to the supermarket and trips on public transport. Not a sacrifice really.

Ellen is doing reasonably well. Her third stem cell infusion happened without complication. However, for the first time today she has not wanted to go out of the room but is now thankfully soundly asleep. We are still 'all holding in there'!

Monday, 13 July 2009

Day 8

Ellen has had a reasonably good day. Thankfully her line does not need to come out and she is not yet in isolation. Her first stem cells were infused today which went to plan. She will be given more stem cells over the next three days. After that we just wait for her bone marrow to recover. As ever we just hope things will run smoothly....

Sunday, 12 July 2009

Day 7

Ellen has been better than we had expected today. She does have a line infection. We will find out tomorrow if her line will have to be removed. Nevertheless her stem cell transplant will begin tomorrow afternoon. We are not yet in isolation but that will probably start early next week depending on her blood test results. We just keep our fingers crossed that things will run smoothly next week.

Saturday, 11 July 2009

Day 6

Well it has begun.....

Ellen has been impressively well for the past few days. She was even allowed home for a couple of hours yesterday evening. However like a bolt of lightening she has become unwell this afternoon. One minute we were painting in the playroom and the next she had a high temperature and a very impressive rigor. She has a presumed line infection and is back on IV antibiotics. We just hope that this will keep it at bay or we will run into the nightmare of a new line in the middle of her stem cell transplant.

Wednesday, 8 July 2009

Day 3

We are now half way through the high dose chemo phase of Ellen's bone marrow transplant. She is doing amazingly well. She has spent most of the day running up the hospital corridors singing 'We are the champions'. It is still very tough for us as we are aware that Ellen is somewhat of a ticking time bomb as the side effects of the chemo will not present themselves until next week. We have been told that all children respond differently and we can only hope Ellen's response is a mild one!

Monday, 6 July 2009

Day 1

High dose chemo has begun. We are now in a small side room which is thankfully 'air conditioned'. Ellen is in good spirits, little does she know how long she is going to spend in this room...

Last few days of freedom

Saturday, 4 July 2009

Back to reality

Ellen's bone marrow transplant will start on Monday. This will take a minimum of six weeks and initially involves very high dose chemotherapy for a week. Her stem cells will then be given back to her via her Hickman line. This whole process is very high risk and we have been told that Ellen will become extremely unwell throughout the procedure. We are all (apart from Ellen who remains her cheerful self) completely terrified. We will keep you posted.......

Friday, 26 June 2009

Enough stem cells!!

We are pleased to say that Ellen's bone marrow aspiration was successful and we now have enough stem cells. The transplant will start next week so we have a few days of fun before the long summer visit to hospital begins.

Wednesday, 24 June 2009

Taking a break...

Due to the slight stem cell set back last week we were able to take an unexpected break from treatment and spend a few days in Dorset. Ellen had a fantastic time looking for sea life, chasing rabbits, dancing (see video clip attached) and watching Mummy and Daddy go for a rather cold swim in the sea. Ellen was also able to see her Great Grandfather and her cousin, Harriet, for the first time since she has been unwell.

Unfortunately, we are now back in hospital as Ellen has had another infection of her Hickman line. It currently seems to be responding to antibiotics. We hope that her stem cell harvest will take place on Friday 26th June.

Tuesday, 16 June 2009

Not enough stem cells

Unfortunately we were not able to get enough stem cells from Ellen's blood, even though she was attached to a very large machine for 4 hours. She is therefore going to have to have them removed from her bone - this will involve yet another general anaesthetic. We are unsure when this will go ahead but hope it will be within the next few weeks. We are all very disappointed but on the positive side Ellen is very well. She is very pleased with what she calls her 'new haircut' - its all gone!!!

Friday, 12 June 2009

We are home!!!

Ellen never ceases to amaze! This week she has had a major operation on Monday, ITU Tuesday, up to the ward play room Wednesday, laughing with the nurses Thursday and home Friday. She really does take everything in her stride. She also managed to say to the surgeon 'Thank-you for the operation Mr Brain'!! We now await a stem cell harvest on Monday.

Thank-you to all those who have offered to run the London Marathon in support of Ellen.

Tuesday, 9 June 2009

Doing well

Ellen has made it out of the dreaded ITU. She is currently fast asleep on the ward. She is a little grumpy - she keeps asking to put her clothes on and go home - but is otherwise well.

Monday, 8 June 2009

Ellen's operation

Ellen's operation has gone well. The surgeon managed to remove the majority of the tumour. She is currently sleeping in the paediatric ITU.

Friday, 5 June 2009

Our week off

Ellen has had a lovely week off. She has had dinner with the girls, visited London zoo, been out to Lunch with Grandmum and Grandad, been to the Fitzwilliam Museum, fed the ducks and been to the swings and slides. Her series of tests last week showed that the tumour has shrunk further. However she is still due to have her operation on Monday 8th June.

Despite a fantastic week we have unfortunately had a minor set back as Ellen has been admitted to Addenbrookes with a suspected infection in her Hickman Line. She is on IV antibiotics and appears to be getting better.

Monday, 25 May 2009

Mr Brightside

Ellen has had a great week. She has been on the train to London, walked along the Southbank and visited the Tate Modern. She then spent the weekend on the Suffolk coast throwing stones into the sea and eating ice cream. We now await a week of tests...