Flower girl

Ellen is still doing well. She was a flower girl at her Uncle Toby and Aunty Katie's wedding this weekend. She was very excited and really enjoyed the day. It was a joy watching her walk up the aisle. She has her monthly check this week so back to reality.....

Back to the West Country

Ellen had her first visit back to Bristol last week for a 5-month post transplant check-up. All went well and the bone marrow transplant team at Bristol Children's Hospital were pleased with her progress. They have reduced the number of medicines she has to take to just a couple now, and the main issues are continuing to try and get her to eat enough and to stay away from winter illnesses. We took the opportunity to make a long weekend of it, catching up with family and friends, which included a trip to Longleat (as shown in the photo) and a very well earned swim! A much needed, but still exhausting, break for us all.

It is OUT

Ellen's Hickman Line came out today. This involved a general anaesthetic and a ten minute operation to pull/cut it out. She is now doing fine and is very pleased. Her nose tube is also out - this was a far less planned event as George pulled it out by mistake during a sibling tussle! We hope to be swimming by the end of next week.....

Doing OK

Ellen is still doing well. She started home tuition this week which is a very welcome addition to her weekly routine. Provided Ellen's blood results are OK tomorrow we are hoping that her Hickman line will be removed in the next few weeks. She is so excited at the thought of being able to go swimming. Here's hoping all goes to plan ....

On track

No significant news since the last update. Ellen is doing well. She continues to have problems eating and with her guts, but other than that remains well and is enjoying life as much as she can. She is now off her immunosuppressants; we have a long wait until her immune system is anywhere near normal, but so far all is on track.

Day +100

We have made it to day +100 and (unsurprisingly) there seems to be no apparent difference to day +99! It is a significant milestone though, as Ellen will start to be weaned off her immunosuppressants. It will take at least a year for her new bone marrow to be fully effective and we still have to be ultra-vigilant about avoiding crowds and potential sources of infection. All being well, she may be back at school in January. Ellen is making steady progress but the biggest struggle is nutrition. She is underweight due to a combination of not eating enough and recovering guts. It is, however, over 7 weeks since her last transfusion and all her blood results are gradually heading in the right direction.

We briefly wanted to thank all of you who sponsored Rowley in the Ultra-Trail du Mont Blanc. Unfortunately he had to retire injured after an incredible 79kms in 15 hours. A great effort nonetheless and he has raised over £10,000 for CLIC Sargent.

Day 86

We are still on track. Ellen and George are enjoying the sun/rain in places that are uncrowded enough for us to visit (not an easy task in the Summer Holidays!). We are now on twice weekly visits to hospital and still counting down the days to day 100.....

Day + 77

Ellen is doing well. We are still going to hospital three days a week for IV medicines and a check up. Ellen is still having a mass of medicines and being fed through her NG tube. We are counting down the days to day +100 from transplant (Sep 18th) when the risk of significant post-transplant complications reduce and things should hopefully get easier.

Good Luck Rowley!

Just a quick blog to say good luck to Rowley in the Ultra-Trail du Mont-Blanc which starts next week. See our post of 30 July; he is raising money for CLIC Sargent in Ellen's name, a charity very close to our hearts. Many thanks to all who have sponsored (and apologies if we haven't managed to thank you in person) and its not too late for anyone else who wants to donate. Click on the following link for Rowley's fundraising page. CLICK HERE

Steady as she goes......

Ellen has had an uneventful few days. She is getting stronger and enjoying her limited freedom. We still have to be in hospital at least three days a week but thankfully this is currently on an outpatient basis. In between hospital visits we spend most of our time trying to keep Ellen and George entertained whilst having to avoid any crowds as Ellen's immune system will be compromised for some time; this is not an easy task during the summer holidays! We hope that Ellen continues to remain free of infections and transplant complications over the coming months.

Please watch this...

Ellen continues to do well and there are no significant updates since the last blog. The following link is from a survivor of neuroblastoma. It is incredibly difficult for us to explain what it is like to be Ellen's parents trying to support her through this but even harder to try and understand what it must be like for her. The following link provides an articulate insight into what Ellen and many others have had to endure, and continue to do so. CLICK HERE

Day +50 and Ellen is home!

Ellen has continued to improve since being back in Cambridge. A combination of factors including her being well, us living so close to Addenbrooke's hospital and a not insignificant amount of parental pressure has meant that she has been allowed to sleep at home and is now being treated as an outpatient. A massive step forward but we are all too aware that things can change quickly and she remains vulnerable to infection or post-transplant complications. She isn't yet eating or drinking sufficient quantities so we need to feed her through her nose tube overnight and throughout the day, as well as administer a cocktail of about a dozen different drugs. We are all, however, enjoying the time at home and sleeping in our own beds!

During our time in Bristol we were very fortunate to be given a room at Sam's House, a charity house run by CLIC Sargent for families whose children are having bone marrow transplants. CLIC Sargent are an amazing charity and made our stay in Bristol a much easier experience. One of our good friends, Rowley Aird, has kindly offered to raise money to support CLIC Sargent by running the Ultra-Trail du Mont Blanc, a 167 km trail run that climbs over 9700 metres (equivalent to running from sea level to Everest and then down again!). Whilst Rowley is mad enough to do this sort of thing for fun, we are very honoured that he has chosen to do so in Ellen's name and we would be extremely grateful to anyone who can help him raise some money for such a great cause. Please see following link: www.justgiving.com/utmb4ellen

Bye bye Bristol

Well, we have left Bristol!!! After what seemed like days of packing, we made an uneventful trip with a very full car from one hospital to another. We are now settled back at Addenbrookes. Ellen was so delighted to be back in Cambridge. It was so wonderful to see her running up and down the ward (chasing her favorite cleaner!). We do not know how long we will be inpatients as we are struggling to keep Ellen's fluid intake up to counterbalance the effects of all the nasty medicines she is on. However, we are firmly one step closer to home......

Day +42

Ellen is doing well. She has been allowed off the bone marrow transplant unit for a few hours each day and is due to go on "weekend leave" to the charity house where we have been living for the past eight weeks. This means all of us sleeping in a room together, which could be interesting given George's waking patterns! If all goes well we may be transferred back to Cambridge next week. The photo attached is Ellen in her new Rapunzel "Tangled" dress.

Day +34

Ellen is out of isolation!!!! She was able to spend the afternoon with George and they had a lovely time in the sun. As she keeps saying 'we are one step closer to home'.

Day +31

Ellen has had a good couple of days. Her temperatures have settled and George's bone marrow is kicking in. Ellen had a normal neutrophil count this morning for the first time since January! With the help of her new NG tube we are starting to get some feed going and her liver function is also improving. If she continues to have another few good days we MIGHT be out of isolation by the end of the week!

Day +27

Ellen has gradually improved over the past few days. Her white blood cell counts, which represent her ability to fight infections, have been steadily increasing. Her temperatures are lower as are her infection markers and abnormal liver functions. She had a CT scan on Monday which looks clear. In short, she is getting clinically better and this is a promising sign of engraftment of the new bone marrow cells. In herself she is a bit brighter which is great to see. We hope all this means she has finally turned a corner and we are making slow progress.

Day + 25

Ellen has had a bad few days. Her temperature has rocketed and her liver is struggling. She is still being very sick and on morphine for her mucoscitis. She is very miserable and not herself. We are hoping this is all due to "engraftement syndrome" (i.e. George's bone marrow starting to work) but it may be an infection, which would be very worrying at this stage. We are still waiting for her blood counts to recover which won't happen until George's cells have engrafted and means she remains very vulnerable.

Day +18

Ellen's mucositis is starting to get a bit better. She is still on a morphine infusion but is not being sick so much and her mouth is not quite so sore. She is able to sit up and is a bit brighter, but she is not yet eating or drinking and continues to be fed intravenously. We are waiting for George's stem cells to engraft (ie for Ellen to start growing her new bone marrow) but expect that to happen over the course of the next week. That in itself may bring more risks and complications but we find it best to take one day at a time!

Day +12

Ellen is still having a really tough time. The muscositis is so bad that she cannot eat or drink anything and she is on a constant morphine infusion for pain relief. Her mouth is very swollen and it is difficult for her to speak. She is still vomiting mucous and blood, and we have been told that this will continue for another four or five days. She also spiked a temperature of 39 degrees today, which we hope is nothing too serious but only time will tell.

Day +7

Poor Ellen is having a rough time. Her guts are really suffering with mucoscitis. She is being sick regularly despite maximum anti-sickness. She no longer has her NG tube as there seems little point with her vomiting so much. She has also had some blood-stained vomit which is a bit of a worry because of her previous duodenal ulcer. She is again on regular morphine for tummy pain. We have been told that this should continue over the next few days and will hopefully not get significantly worse.

George has recovered well from his operation.

Mucositis again...

Ellen is getting used to her isolation room (aka "Rapunzel's Tower") but unfortunately is now starting to feel the effects of the chemotherapy conditioning regime. She has developed mucositis, which means she is being sick regularly, has diarrhea and is unable to eat. She is being fed by a combination of feeds through her naso-gastric tube and intravenous nutrition in her Hickman line. The sickness often leads to her needing a new nose tube (currently averaging one new one per day) which is very uncomfortable and distressing for her, yet she remains amazingly brave and stoical. We have been told that the mucositis will get worse before it gets better over the next week or two. She is also on a cocktail of various antibiotics, antifungals, immunosuppressants and other IV infusions. All of this is to be expected at this stage but understandably that is little consolation to Ellen!

Well done George!

Transplant day has gone to plan. George had all the hard work to do but his operation to remove a significant amount of bone marrow went fine and, other than being sick all over his mum, he has recovered ok. Ellen has now received the transfusion of George's bone marrow stem cells. She is doing well so far but is likely to get very poorly over the coming weeks due to the effects of the conditioning treatment and it will be some time before we know whether the transplant has worked or not. In the meantime, she is now in her isolation room which she cannot leave until the transplant has grafted. Thanks to all for your continued support.

Calm before the storm

Ellen is doing well. She is having her last infusion of high dose chemotherapy today. She has managed to only be sick once and has as yet not had a temperature. The effects of this chemotherapy are delayed so we are now just waiting for them to kick in. We go into isolation on Friday after George has had is marrow removed. Ellen will not be allowed out of the room for a good few weeks. She will only be allowed to be visited by her Mum and Dad and is likely to get very poorly!

Treatment started

Ellen has been moved to the bone marrow transplant unit and has started her treatment. This has so far been uneventful. She is in good spirits and we hope she may be allowed out for a few hours each day to enjoy the sun.

Good to go..

Ellen's bone marrow aspirate is clear so we have had the go ahead for the bone marrow transplant to begin this Friday (3rd June). We are still in Bristol and will be until the end of this treatment. Ellen is pretty well at the moment. The bleeding she was having has settled and her temperature has been down all weekend. So, on Friday she will start seven days of high dose chemotherapy. At the end of this (10th June) George will have an operation to remove a large amount of his bone marrow. This will be given to Ellen via her Hickman line on the same day. We then wait for Ellen's bone marrow to become George's. Sounds easy enough but in practise involves too many risks to think about. The minimum inpatient stay is 90 days!! We will keep you posted.

So near yet so far...

We have had a week of ups and downs. Ellen was finally discharged from hospital last Sunday after 10 weeks in hospital. We were so pleased to be home and to be able to sleep in our own beds. We had to visit the hospital on Monday morning for Ellen to have a new Hickman line, chemotherapy into her spinal fluid and a bone marrow aspirate to check that there was still no leukaemia cells present. This went well and the aspirate result was clear. We then set off to Bristol on Tuesday evening for a pre-bone marrow transplant check up on Thursday. This involved blood tests for both Ellen and George and a long and very scarey conversation with Ellen's new consultant outlining all the terrible and potentially life-threatening things that may happen to Ellen during the course of the transplant. As we were getting ready to go back to Cambridge it became clear that both Ellen and George had a high temperature. Ellen was promptly admitted to the Bristol children's oncology ward for IV antibiotics and George was shipped off to the Grandparents as he is unable to come onto the ward when unwell. Ellen's temperature settled but she then had a big bleed, probably from her previous duodenal ulcer. This has caused her blood counts to drop again. The doctors here are now worried, however, that an alternative explanation for her counts to have dropped could be that Ellen may have had a relapse of her leukaemia; they therefore want to do a repeat bone marrow aspirate next week. If this is clear, the transplant will start on Friday 3rd June. If it is not clear, we will be sent home with no further treatment options. Again the long wait continues. Please keep everything crossed for our brave little girl.

Biopsy result

The results of Ellen's biopsy are reassuring. Whilst there is some damage to her liver (which we knew about anyway) we have been told that it is not severe enough to prevent her proceeding to bone marrow transplant. This is very good news. We still have to wait for her bone marrow to show signs of recovery from the last round of chemo before progressing to the next stage, but Ellen is feeling much better and is starting to walk, eat and laugh again.

Biopsy done

We arrived in London yesterday evening in an ambulance. Ellen had her biopsy this afternoon which went as planned and without complications. We will stay here in King's overnight and then hope to go back to Addenbrookes tomorrow afternoon. We should get the results of the biopsy on Tuesday/Wednesday but are still waiting for Ellen's bone marrow to start working again. We hope that will happen soon as we are unable to go on to the bone marrow transplant until it does. The long anxious wait continues...

Pre-biopsy nerves

Ellen has managed to not have a temperature for five days and is starting to get a bit of strength back. We are finally set to go by ambulance to Kings Hospital tomorrow for a liver biopsy on Friday (subject to her not getting a temperature in the meantime). We should get the biopsy results by early next week. Please keep your fingers crossed as the outcome of the biopsy may be critical in determining Ellen's treatment options.

Some progress

Ellen has slowly improved over the past week. She is managing to eat a little bit and has only been sick a few times. Her temperature is starting to settle and her blood results show that the infection is improving. Unfortunately, her bone marrow is still fairly empty and we think it will be about a week until we see any significant change. It was decided on Wednesday that Ellen would not be fit enough for a liver biopsy this week. We hope she will be able to have it at the end of next week. The long wait continues....

Slow Progress

Ellen is still very poorly and into her fourth week of this infection; she has been in hospital for three months now (with only one week at home) which is understandably taking its toll. She is starting to show some signs of progress (less vomiting and tolerating more nutritional feed) but still having high temperatures. We are trapped in a vicious circle as the infection is suppressing her bone marrow recovery but she can't fight the infection effectively without an active bone marrow. A combination of this slow recovery and the logistical impact of all the public holidays has delayed the liver biopsy in Kings Hospital which we now hope will be towards the end of next week. Thanks for all messages of support.

Getting complicated ...

Ellen is off the Paediatric Intensive Care Unit. She is still having temperatures and vomiting but no longer needs oxygen. We are still waiting for her bone marrow to start working and her blood counts to improve. This is likely to take another week to ten days. Only then do we think that her temperatures will improve. She is also at risk of picking up further infections during this period so we are really hoping that things remain stable.

Two days ago Ellen vomited fresh blood so yesterday she had a general anaesthetic and an endoscopy to try and indentify the source of bleeding. The bleed had come from her small bowel due to the damage done by her recent courses of chemotherapy. This is good news as things should heal on their own. However, the endoscopy also confirmed that Ellen has some damage to her liver. We are unsure what has caused this, it is most likely due to all the chemotherapy she has previously had. As a bone marrow transplant will involve treatment that may further damage her liver we now need to determine the cause and extent of the damage. This will involve taking a sample of Ellen's liver tissue and looking at it under a microscope. As Ellen is at such risk of bleeding this procedure will have to been done by passing instruments down her jugular vein. They are unable to do this at Addenbrookes so this will be done at King's Hospital in London. This will hopefully be done next week and will involve a trip in an ambulance and an over night stay. We are all terribly anxious that the liver is damaged to such an extent that Ellen will no longer be fit enough to have a bone marrow transplant and will thus have incurable disease and no chance of long term survival. After all she has been through this will be a very difficult reality to face. So please please keep your fingers crossed for our brave little girl.

Update

Ellen is still on the Paediatric Intensive Care Unit. She remains unwell. She is still having regular fevers despite a multitude of antibiotics and is still requiring oxygen and morphine. She is also struggling to keep any fluids down without vomiting. We are waiting for her blood counts to come up as this should help fight the infection. Things could be a lot worse, but it is taking a painfully long time for us to see any improvement.

Intensive Care

Ellen has had a bad 24 hours. We were transferred to Paediatric Intensive Care Unit (PICU) yesterday afternoon as she was becoming progressively unwell with fevers and difficulty breathing. It became apparent that her Hickman line may be infected, causing severe sepsis. The line was removed this morning. This involved a general anaesthetic and was carried out on PICU as Ellen was too unwell to wait for a theatre slot. Her condition has improved slightly since the Hickman line came out but she is still very poorly. She will be kept on PICU for at least a few days whilst they continue to monitor her closely.

Poorly again

Ellen has been unwell since the weekend. She has had a high temperature, is vomiting and again has fluid on her lungs. We are waiting to find what the cause of the infection is. Ellen is obviously feeling really rotten. She has some brighter spells during the day but is generally pretty miserable which is so unlike her. We are still waiting for Ellen's blood counts to improve. Hopefully when that happen she will start to feel a bit better...

Ellen is starting to get better. Her mucoscitis is improving and her chest infection has cleared. Today she managed to get out of bed a build a "den" with hospital sheets and blankets. We are still confined to a side room but hopefully that will change over the weekend so we can visit the playroom and even enjoy the sun...

More of the same

Ellen has had another bad week. The mucositis has continued and she has had problems with fluid overload as a result of all the medication and supportive infusions. This has caused fluid in her lungs and associated breathing difficulties, requiring her to have oxygen at times. She has had temperatures and a viral infection, so all in all not much fun. We hope things will pick up a bit this week.

We have now had confirmation that the next stage of Ellen's treatment will be a donor bone marrow transplant. Fortunately, her brother George is a tissue type match. Sibling matches are generally better than non-related donors and we don't have the complication of searching the worldwide bone marrow register, which is good news (except maybe for George!). The transplant will take place in May. It is a lengthy and complicated procedure and needs to be done in a specialist unit at the Bristol Children's Hospital. We can expect to be there for at least 3 months! We are hoping that Ellen gets some time at home before then as she will be in an isolation room for most of the time in Bristol.

Marathon not a sprint...

Ellen has continued to have bad mucositis and is still being sick. She is being fed intravenously (as her gut isn't working) and she is on regular morphine to relieve pain. She has had a few brighter spells, however, and made it out of bed and into the playroom a couple of times. She even managed a brief trip outside on Thursday to see Daddy hit with a water-bomb! We can expect more of the same for the next few weeks.

This time last year Ellen was coming to the end of her neuroblastoma treatment and a number of people (including her Dad, two of her uncles, a second cousin and a number of other close friends of the family) were in final training for the London Marathon. As a group of 12, the "Running for Ellen" team raised a total of over £75,000 for Sparks to fund research into curing neuroblastoma. This year one of the team is doing it again! Please support David Johnson (DJ) in this great cause by clicking here.

Tough week

Ellen has had a tough week. The second round of chemo has caused her to have bad mucositis (inflammation and ulceration of the digestive tract). She is being sick, has constant diarrhea and requires morphine to manage the pain. She is unable to leave her bed and feels understandably miserable! The chemo has now finished but these symptoms are likely to continue for a while longer and we still have a wait of 4-5 weeks in hospital before her bone marrow starts to function again.

Round 2

Ellen has recovered from her first set of chemotherapy and came home on Monday for a well deserved week away from hospital. She has been on fine form and we received good news on Thursday that the initial chemo has worked and she is now in remission (ie no sign of leukaemia cells). Unfortunately, given the high risk of recurrence, she needs further intensive treatment which involves another round of chemo followed by a bone marrow transplant. We are heading back to hospital for round 2 of chemo tomorrow and, all being well, expect to be there for 5-6 weeks before Ellen is well enough to come home again.

Still waiting....

Ellen is doing OK. She had another infection towards the end of last week, but that has now settled with more IV antibiotics. We are still waiting for her blood counts to come up before they can assess how she has done. This will take another week or so.

Ellen is 4

Ellen had her birthday celebration on the ward this week. She had fun dressed up as 'Jessie' from Toy Story. She is doing pretty well at the moment. We are still waiting for her bone marrow to start working again before we find out if the chemotherapy has worked. We hope to then have a few days at home at which point we will have a proper party.

Update

Ellen is doing as well as can be expected. The temperatures and mucoscitis seem to have stopped, but she is very tired and all her hair has now come out. She is on IV antibiotics and is being fed via naso-gastric tube. We still have a few weeks before her bone marrow will hopefully start to pick up and we will find out how successful this course of chemo has been in attacking the leukaemia.

Lag effect

The effects of Ellen's chemotherapy are now kicking in. She has a temperature and is developing mucoscitis (inflammation of the lining of her gut). She will soon need another nose tube as her appetite has tailed off. These effects will get worse before they get better so we now just sit and wait for her to feel better.

Doing OK

Ellen's Hickman Line went in fine. She has now had three days of chemotherapy and is doing OK. We now have a week more of daily chemotherapy. We will then continue to be in hospital for 4 - 6 weeks whilst we wait for the effects of the chemotherapy to wear off. At this point we will find out if the chemotherapy has worked and therefore what the next step will be.

Signing in

After a truly wonderful summer Ellen has sadly become unwell again. She has had several viral infections over the past eight weeks. We initially thought that these were straight forward winter bugs but it has now become clear that Ellen has developed Acute Myeloid Leukaemia. This is a rare complication of the bone marrow transplant she had 18 months ago. Today she is having another Hickman Line put in and will start a course of chemotherapy that we hope will clear the leukaemia cells. It is going to be yet another tough journey for Ellen as the doctors are not sure if the chemotherapy will work. We remain positive that Ellen's strength and tenacity will get her through this.