Diary Entries (Latest at bottom of page)
Friday 22nd July 2005
Bobby has got an infection in his central line and is now on I.V antibiotics, a setback but he is in the best place, Bristol Children’s Hospital where he is to have his last session of chemo before his operation, we remain positive.
We have had some offers of help. Uri Geller has donated some money and will help with publicity. We will keep you updated with regards to upcoming events.
Wednesday 3rd August 2005
Bobby has a bone marrow and bone aspirate biopsy at the Bristol Children’s Hospital today. Another general anaesthetic for him and more pain. Tomorrow yet another general anaesthetic and C.T Scan, but we will then have a better idea of how much his tumour has shrunk.
We will have a meeting with the surgeon next week before his operation, on the 10th of August, to get an estimate of how much of the tumour is likely to be removable.
We are off to meet Uri Geller on Saturday. He has been so helpful to us in lots of ways and his donation is much welcome. A good man indeed. I will update after the meeting with the surgeon and other medics.
Wednesday 10th August 2005
Bobby is going to Bristol Children’s Hospital today to have an operation to remove the remainder of his Neuroblastoma tumour. The operation originally thought to take 6hrs is now estimated to take 3-4 hrs due to the fact the tumour has shrunk from 7cm x 8cm to the size of a £2 coin. This is very good news and the surgeon’s think Bobby might not need to go into intensive care because of this. When Bobby woke this morning he said, “lets go and get out this nasty blastoma” and also “I want to be well so I can eat chocolate again”.This is all good news and things are on the up.
Thank you for every body’s kindness and all prayers are with Bobby today.
Friday 12th August 2005
Bobby had his operation the day before yesterday which went well and he is making a steady recovery in the Bristol Children’s Hospital. Surgeons are pleased with how the operation went and managed to remove 98% of the tumour most of which had calcified.
Bobby was brought to the intensive care unit after the operation but is now on a general ward where he is with his family and being looked after.The next step now is for Bobby to have a bone marrow harvest and then high dose intensive chemotherapy after which he will be in an isolation room for 4-8 weeks.
Its still looking good and we will keep you posted.
Sunday 21 August 2005
Bobby spiked a temperature this morning and was sick. He ate nothing all day. He is now on I.V. antibiotics again. Two steps forward, but one back. His bone marrow harvest is on Tuesday so we are just praying that he will be well enough for it.
The fund raising is moving along but nothing like it needs to, so if any of you can help please call me on 07940 791375.
We are hoping to arrange a massive raffle with a car as the top prize together with cash and my Honda CBR 600 motorbike. Anyone with experience of raffle organising please call me.
I will update again after the harvest.
Sunday 29 August 2005
We brought Bobby home on Wednesday evening and the race is now on to get him fit and in the best condition possible ready for his intensive chemotherapy which is extremely harsh and life threatening in itself. We are feeding him little and often, all good organic cancer fighting foods and supplements. We expect the chemo and isolation to start around the middle of Sept.
I had a meeting with the consultant oncologist at Bristol, Steve Lowis on Thurs and I have chosen the BuMel chemotherapy option. Bobbys bone marrow and bone aspirates are clear of disease and his bone marrow harvest to be used to rescue him after his high dose treatment was also a success as almost twice the amount needed was harvested.
The fund raising is going slower than we need despite many peoples great effort. £200,000 is a lot of money by most peoples standards so I am going to organise “Bobbys Massive Raffle” with a car as top prize and many other prizes including cash. All I need to do now is find someone to donate one!
As ever we remain positive and will spend as much time as possible with Bob while he is at home.
Weds 14 September 2005
We take Bob back to Bristol tommorrow for his Mat (maximum action treatment), high dose chemotherapy, a day late as the hospital thought we were taking him to the U.S. for this even though they harvested his bone marrow themselves. It is so frustrating but I guess that within any massive organisation communication problems must happen. Bobby is very well, strong and ready for the treatment and 4 to 8 weeks of isolation. The isolation will be tough for Katie too as no children under 12 can go onto the isolation unit. All thoughts and prayers will be for him over the next few weeks.
As for the raffle, if there is to be more than £20,000s worth of tickets to be sold we need a licence from the Gaming Board- cost £4934. Under this and the licence is £35 from the local council so we will hold lots of smaller draws to raise the money Bobby needs. All help is needed so please call us to receive your tickets and please sell as many as you can to friends family and work colleagues.
Tuesday 27 September 2005
Booby had his high dose chemo and initially took it very well. However he started to vomit on Saturday afternoon and has not eaten since. He is now receiving overnight TPN (total parental nutrition) which will stop him losing weight. The hospital wanted him to have a nasal gastric tube which are extremely unpleasant when inserted up the nose and down the throat and are put in with no anastetic and the feed thats used is a cows milk based product similar to baby milk formula. Bob was breast fed and since the diagnosis one of the many things I have discovered is that dairy is very bad news for cancer patients. The TPN is soya based and goes in through his central line, so no vomiting and a far superior feed. He is likely to get mucositis, inflammation of the mucous membrane from mouth to bottom, but this presents far worse in some kids than others. I have obtained a homoeopathic remedy for this which reduces the length and severity of the mucositis, so we hope it wont last too long.
The fund raising is still moving along. Once all the money that is outstanding is in we will be over £25k, so we are 1/8th of the way there. If any of you know a millionaire to whom this sum would not be a major amount please ask them if they could make a loan to the fund which would be repaid from fund raising, as the American’s are saying that the optimum time for Bob to go to be treated is in 6 to 8 weeks time.
Monday 3 October 2005
Bobby is still doing well although still vomiting and still not eating which is pretty distressing. Jacqui is bearing up well, her strength is an inspiration to me. It is day 10 past transplant today so the mucositis should start to improve soon. Bob is such a brave little chap and is remarkably happy considering how ill he is.
To fundraising, Bobby needs to go to New York as soon after isolation as possible so the pressure to find the funds is increasing. I have found a company who run text to win type competitions and have set up a text to donate service free of charge. To donate £1.50 just text bobby to 88800. How easy is that? If all parents and grandparents in Devon could do this the cash would be raised.
Wednesday 12 October 2005
Hi I am a close friend of the family and kevin has asked me to update the diary. Kevin is currently up at Bristol hospital with lilttle Bobby because things have taken a turn for the worse.
Jacqui has returned home, because she is ill and cannot be with Bobby because he has no immune system.
All our hope and prayers are with Bobby.
Kevin will soon update the diary when he is back.
Tuesday 25 October 2005
Hooray!! Bobby came home yesterday, he was so excited when we came into the village, clapping and laughing. He was so pleased to sleep in his own bed. He is eating well and taking his supplements and going from strengh to strengh. He will start 6 months of retinoic acid as soon as possible, so he can go to New York as soon as his immune system is strong enough to fight of any infections he may encounter on the aircraft, probally 2-4 weeks time. All we need now is the money. We will have almost £50,000 when all that is outstanding comes in, so only £150k to go! We keep on fundraising so any help you can give us is most needed.
Friday 18th November 2005
So sorry I havn’t updated before but our website provider who is charging us had a fault so I could not get in to change it for over 2 weeks but all seems to be working now
Bobby is so very well, he has put on more weight and grown taller. His blood counts still need to be done every three days and he had a drug to stimulate his immune system today as he is still at great risk of infection so I have been keeping him away from any contagious looking peaple!I have a fax from MSKCC that says “Dr Kushner would like to see Robert for tests as soon as possible-the sooner, the better”. Know any millionaires who can lend us the money?There are so many events organized over the next few weekends. I will have Trevor who is the lad who does the website update it on Monday.
Was annoyed yesterday as I read in our local paper that Neuroblastoma is incurable. Not true. The first child to be cured is now 41 his name is Rick Scarlet. 20 % of children beat this cancer and the percentage is increasing all the time. Positive thinking is so vital yet so difficult at times. Peoples who believe in black magic will die if the witch doctor tells them they will. After all, the placebo effect can only be the result of positive thinking.
Monday 28 November 2005
Bobby is still so very well, no infections and his blood counts are stabilising nicely. He now has a blood count at Wonford hospital only on Mondays and Fridays so we will see today wether he needs GCSF, the immune system boosting drug. As soon as his counts are stable we can begin with the differentiation therapy which is oral medicine, 8 capsules a day for 14 days, then 14 days off for six months. Some children though suffer from some very unpleasant side effects which can lead to the treatment being stopped, so we are praying that he will tolerate this as well as all his other treatments and that side effects will be at a minnimum.
This weekend was so busy with lots of fundraising events, our heartfelt thanks to all concerned, well done to you all. We still have lots of draw tickets to sell so please call if you can place some for us.
There are many more events in the pipeline so please check the events diary regularly.
If any of you have any questions whatsoever please do not hesitate to call us.
Tuesday 5th December 2005
Bobby is still very very well and getting stonger daily. His hair is starting to regrow, his head feels like a peach! all lovely and fuzzy. He started the last part of his UK treatment today, Ro Accutane, mega dosses of vitamin A to you and I. We have been stressing like crazy over the last few weeks as the RA is in capsules and we have been practising with omega 3 oil caps and some of his other supplements that are in capsule form and Bob has been unable to swallow them. His supps are ground up and mixed with freshly squeezed juice which he takes from a syringe but the RA must be taken in the capsules to ensure the correct dose is given, so this morning we put the RA caps in front of him with his apple juice and they went down first time! We were so happy we all cheered and clapped so all day he has been asking for more! He is just such a marvellous little boy, so eager to please.
The fundraising is coming along, a friend of ours has offered to remortgage his house so we can go sooner but obviously it will need to be paid back and is a last resort. He can get around £50k so in theory we are halfway there but I am still hoping and praying that some one to who this is not a lot of money will turn up and save Bobby.
There are lots of fundraising events in the pipeline into the new year so its going to be busy busy busy.
We have lots of draw ticekts left so if you or any one you know can take some please call me.
Thank you all so much for your thoughts and prayers they are so very welcome.
Monday 12th December 2005
Unfortunately Bobby as a fungal infection and he is on the way to Bristol today, we are all praying he will be ok. I will update the diary as soon as I hear from Kevin.
Tuesday 20th December 2005
Bobbys fungal infection has cleared up so it looks good for christmas. It will be my best christmas ever as not so long ago it was very possible that he would not be with us. He is eating well, has lots of energy and takes all his medicene and supps like a trooper.
He is due an MIBG scan which involves the injection of a very radioactive isotope into his blood stream to see if the neuroblastoma is no longer in his bone marrow, a drug to block his thyroid gland from the isotope, a general anasthetic for a bone marrow biopsy and bone trephines and a CT scan under another general anasthetic. The problem is that should there be any residual disease in the marrow the hospitals here have no treatment protocol for this, or relapse in the marrow, which is the most common relapse site by far. The Americans use the antibody therapy on all relapses and get good results so we have decided not to put Bobby through all the investigations here and let his body heal. He has been through so much in his short life already.
To fundraising, Lynda the promoter of our draws oversaw the draw at the Royal Oak on Friday. The winners are on Bobbys big draw page on this site. I am trying to organise bucket collections around the pubs of Exeter Torbay and area over Christmas and the New Year, so any help is most desperatly needed. Go on it’ll be a laugh! Call me on 01392 834857
Tuesday 10th January 2006
We had a super Christmas and new year at home, just Jacqui Katie Bobby and myself. Bob is still neutropeonic so we are keeping him well away from any possible infections. His white blood count is not recovering as well as I had hoped it would but then the high dose chemotherapy he recieved in October is a kill or cure treatment and harsh in the extreme so a waiting game is whats required. Bobby has a full blood count weekly so we will know as soon as progress is made. We had the result of a urine test last week which has shown that he does have residual disease in his little body but the retinoic acid he is on can remove this in a few cases. We are hoping and praying that he will be one of these children. This news also means that the pressure is on to raise enough to go to America for the antibody treatment.
As far as fundraising is concerned we have had a terriffic response, we have now raised well over £60,000 so over a quarter of the way there. A friend of mine has offered to remortgage his house and can release about 50K as a last resort as he can’t really afford to, so in theory we are halfway there. The pressure is imense as to lose a child over half the cost of an average house is too painfull to contemplate. Any ideas or asistance would be most welcome.
Wednesday 8th February 2006
Bobby is still very well and getting stronger daily and has grown by 20mm in the last month. The supplements and diet that he is on seem to be having a really positive effect on his health as I have been folowing some other neuroblastoma kids and they seem to be having a far harder time than Bob ever did although we are still very worried about relapse which can happen at any time. Other children that we met during Bobbys in patient treatment have already relapsed and in this country there is no treatment protocol for relapsed neuroblastoma. All you can do is take them home and make them comfortable which is so scary we can not contemplate it. It is so hard to stay positive especialy in the middle of the night when everything seems so much worse. (its 2.30am as I type this)
We have now raised over £80k but at the curent rate of fundraising we wont have the 200k needed untill the autumn at the earliest which seems so far away. All help is still so desperatly needed so please any help you can give Bobby would be so greatly appreciated.
Sunday 26 February 2006
Bobby is still well apart from a persistant but not very symptomatic cough and cold. The candida infestation that was identified from a stool test in Germany is being treated so another stool test in 2 weeks will tell.
We are off to New York on Weds for the long awaited MSKCC consultation. Although we hav’nt got all the money required we will be half way there if all the raffle tickets that have been sent out are sold.
Last raffle over 5000 came back unsold at the last moment so we were unable to sell them. Of course the prizes still need to be paid in full together with the postage envelopes etc. so if you have taken tickets please try to sell every last one of them, and thank you so much for your support and practical help for our Bobby.
I will update on our return from New York.
Thank you for following Bobbys progress.
Kevin Jacqui Bobby and Katie