Hannah's News
Update 30th March 2008
Hope everyone had a good Easter in the snow, apart from Grandma Me and Grandad who have just returned from their holiday in South Africa! Good time had by all.
We had a good time with plenty of eggs and gifts and a trip to the Circus.
Hannah is doing well as far as the NB goes, the Etoposide is allowing her to live her life and go to school and participate in all the things she wants to. She has had a dreadful cold which became conjunctivitis but after some drops this was cleared up relatively quickly. She has put on weight and is growing and has some hair growing back too.
I wish to apologise for all the confusion with the website at the moment, apparently there is another mirror site running www.hannahedwardsappeal.org. which my updates have been going onto but I cannot personally load this up to see! This also shows our current total.
Another apology is that our team for running the London Marathon has dwindled to two from four as Chris and I have both had to pull out due to injury. We have deferred our places to 2009 so we will train and be sponsored for then so don't forget. We also have a five a side football tournament in July and the Dragon Boat races in September to look forward to and I will keep you posted on all these. Hopefully our site will be back to how we all know it before too much longer and we can continue to raise awareness of NB and our fight to find a cure.
Thankyou all for your ongoing support.
H Factor
Hello again.
Had to let you know that Hannah and her friends have made the final of H Factor at school! I knew you would all want to know.
And I have been promised that the totaliser will be updated very soon but we have raised £106k so thankyou to you all.
Being 7
Sorry for the delay in an update but we have just been carrying on with life. Hannah’s mibg scan results showed no change so that was great news and she remains on the oral Etoposide chemo and is coping well with it.
She is at school and Brownies and is enjoying everything that goes with being 7!!
Some bad news is that Chris has had to pull out of the London Marathon with a stress fracture, eventually his Doc believed something was wrong with his leg and he had a scan which showed the fracture!
Hannah still visit’s the stables and is more confident with her riding and we have been also encouraging her swimming, but she seems to prefer being under water than on top of it!
Hannah and her friends have made it through to round 3 of “H factor” at school. They sang Bleeding love by Leona Lewis and hopefully they will choose another number for the next round!!!!
We have plenty of Calendars left if anyone would like one (no charge) and have future ideas in the pipeline.
Anyway must go and do some more training! Catch you soon.
7th Jan 2008
Happy New Year and hope you all had a lovely Christmas time.
Hannah has been well, she has suffered a little discomfort in her neck, right hip and left foot but has been going strong. We had a lovely time over Christmas and New Year including a highlight of a trip to London to see Mary Poppins which was brilliant!
Unfortunately H has ended up back in and David took her yesterday with a high temperature which reduced overnight and now she is still there but singing and dancing and begging to be let home again! She is completely Neutropenic from the chemo which is why she was kept in and given IV antibiotics but as her temperature has remained stable for almost 24 hours now hopefully tomorrow will see her home and Wednesday back at school!!! Chemo has been suspended for now until her count recovers.
Due to the inconsistent pain she has been suffering she will be having an MIBG scan next week to discover if the pain is caused by progressing disease. We will be discussing this at clinic on the 18th Jan.
Apart from that Hannah has been enjoying being Hannah with a star performance in the Chorus in Joseph at school, taking her Brownie promise and visits to the stables to see Ruby the pony.
Thankyou to everyone who has bought a Highcliffe school calendar, there are still a few left if anyone would like one! I might even offer them at January sale price!
Chris and I have our official places for the London Marathon now, very kindly pulled out of the hat, by Wreake Runners (my running club) please take the time to sponsor us for this using the just giving link on the pervious update. We are training hard and giving it our all (we have even spoken of giving up wine after our birthdays!!!!) and this really is a huge undertaking for us (we are both currently slightly injured!) so support us in any way you can, thank you. We will be wearing Hannah vests and there may be some hair dying and shaving going on too so watch out for us on the day too!
Thankyou to all of you who are putting on events to raise money for Hannah and her appeal for research into Neuroblastoma. I know how much work and effort has to go into any fund raising activity, they are never a mean feat so thank you from the bottom of our hearts.
20th November 2007
Hello all.
Well Hannah has come to the end of her first cycle of Etoposide and has been enjoying a relatively normal life. Full time school, Brownies and the odd riding lesson. Her bloods are doing well and she has a check in with Mr V on Friday before resuming round two! Hopefully, then her blood tests can go from weekly to monthly so more time to get to school in the mornings on time for a change!!!
Training for the Marathon has begun in earnest with Chris’s times improving almost daily. With help, I am told, from my now infamous flap jacks!!! Please visit our just giving site to sponsor us for this event in April next year. http://www.justgiving.com/chrisandrew1
Also we, along with Hannah’s friends at Highcliffe, have produced a wonderful 2008 Calendar which will be available for purchase for £5 in the next couple of weeks, so if you stuck for a Christmas present idea look no further. We are also re-creating Hannah’s Guest Book as many of you have mentioned to me that it is not available at the moment. The third party we used for this contacted us to say this was no longer viable and although we have managed to keep all the archive messages it cannot currently be used. This will be available as soon as possible as we love to read all your messages.
Thankyou for your ongoing support as we fight to find an answer to Neuroblastoma.
Fri 02 Nov 2007
Well, Rome was fantastic, what an amazing place. Thoroughly enjoyed by us all and highly recommended! We saw all the sights and of course threw lots of coins in the Trevi fountain, here’s hoping!
As far as Hannah’s treatment goes we have decided not to give her round 10 of the TVD chemo and she started oral Etoposide on Monday 29th October. This is administered twice a day as a medicine at home and means Hannah can go to school and Brownies, swim and see her friends. We are not going to put her through any more scans or tests at present but just be guided by her health and let her enjoy not being so tied to the hospital. We will see Mr Visser once per monthly cycle of chemo and at the moment she will have bloods taken once a week but hopefully that will not be required so frequently.
It is with a heavy heart that I write with the sad news that Jesson died on Monday 29th October. He has fought against NB since 2003 and always had a smile and a hello. Now at peace.
Wed 17 Oct 2007
Hello to you all and a special thank you to all those of you who have organised events and raised Sponsorship money for Hannah’s fund. It is overwhelming all the effort and time that has gone into each event, you are all so thoughtful and words fail me really. Thank you.
Hannah is doing well and has come through her 9 th TVD chemo with the usual infection and high temperature, treated with antibiotics, obviously avoiding the ones she reacted to! She has had a cough and cold for what seems like weeks but being at school they just get passed around. Talking of school she is doing well and enjoying being with her friends and learning about the Romans! History and Geography seem to be favourites at the moment and I am all for that!
Hannah is still enjoying her horse riding lessons when she gets the chance and is getting more confident swimming. Hannah has also started Brownies and can’t wait to get her Uniform. She loves this time of year and likes going on nature walks to pick up conkers and autumn leaves, or maybe it is just because it is close to Christmas!!!!
Hannah’s recent MIBG scan showed no change so we are deciding what the next step should be currently in her treatment.
We are off to Rome next week at Hannah and Cameron’s request as they have both done the Romans at school recently. I will let you know how many Centurions and Chariots we see.
Wed 12 Sept 2007
Hello All.
Since my last update Hannah has had a further round of chemo, taking her to 8 and has also started Year 3 at school. She is really enjoying being back at school and seeing all her friends and enjoying the work!!!
Her 8th round of chemo had a dramatic start as after the first day, her temperature shot up to almost 40 degrees, so back to the Ward we went. It was decided she had a line infection and the usual antibiotics began. However, Hannah reacted severely to an antibiotic she had been given many times before. She required oxygen and was very swollen for a while. After things calmed down she was given a different family of antibiotics and the chemo continued for the rest of the week.
Hannah is now back at school and doing well. She had a lovely holiday with her Dad in Lanzarote just before her chemo started and she enjoyed the water, especially swimming and jet ski-ing!!! More action. She still enjoys riding when she can go and swimming when she is well enough.
Well we did it! The Tri on September 9th was brilliant and I would like to take this opportunity to thank everyone involved for their dedication, determination and sheer hard work in making the whole event the huge success it was. Hannah was there to start the proceedings with Matt Cornwell from the Leicester Tigers and also to give out the prizes at the end. It was a fantastic day from start to finish and I am sure everyone enjoyed it despite the very very early start!!!!!
Hannah has an MIBG scan next week and potentially two more rounds of chemo to take her up to ten which is the maximum she can have of this particular dose. The bruises are appearing so I don’t think platelets are far away.
Finally, please spare a moment for Ryan who lost his brave fight against NB on Monday 10th September.
Wed 4 July 2007
Since my last update Hannah successfully had her stem cells harvested at Birmingham. She was very brave as usual and had to have a femoral line inserted in the top of her inner thigh to harvest the cells as they cannot collect them via her port (although she can have them back into her port.) The line was inserted under general anesthetic and then off she went with Daddy in an ambulance to Birmingham Children’s Hospital. The actual harvest takes four hours when Hannah is connected to an amazing machine which collects the stem cells and gives Hannah back everything else!!!! It took two trips on consecutive days to get enough but following all the GCSF she had received they harvested enough after the second day.
Following the harvest Hannah went straight into TVD round six. She finished that today and is in high spirits and desperate to get out of the Hospital.
Next week we have another MIBG scan to determine what will happen next and there are various options depending on the volume of measurable disease still there. A French drug trial has been mentioned to us and although this is in the very early stages of trial, the two drugs concerned have been shown to react to Neuroblastoma cells. It is certainly worth a try and if H still has measurable disease we are hoping she will be eligible for the trial which will take place in Birmingham.
Hannah remains in high spirits and everyone comments on her fighting spirit and energy for life. She will need this to cope with further treatment but I have no doubt she will face this head on as she has with throughout this journey. She even managed a swim at school in between treatments, her first swim since relapse.
Fri 15 June 2007
Hello all. Hannah has completed her fifth round of TVD and fingers crossed seems to have come out of it relatively unscathed. She has required the usual blood and lots of platelets!!!! Bruises galore.
We had a clinic appointment today and were told that her bone marrow was clear although we still do not have her bone trephine result! Her stem cell harvest is planned for the week after next and her GCSF for the harvest will start a week today. On Monday we have to go to Birmingham where the harvest takes place, as her previous one, for them to take the relevant bloods. If all goes to plan and her trephine is clear then hopefully the following Tuesday she will have a femoral line put in and then go off to Birmingham the same day as long as her counts are right. It should not take so many days of GCSF this time around as she went into it completely flat during her first chemotherapy protocol back in 2003.
Hannah and her Dad were taken to Wicksteed park with Wishes for Kids this week and had a lovely day, and the sun stayed shining! Hopefully next week she will manage some school days as she is full of energy and her appetite is returning slowly but surely!
Thanks to everyone for all their amazing support with our events calendar!!! It is all coming together and we have some fantastic auction items and prizes. Watch this space or turn up on the days for more information!!!!!!!!
Wed 30 May 2007
Well we are back to reality after our brush with celebrity! Hannah had a full week of school and enjoyed herself, especially catching up on all the playground gossip. Who has a crush on who and who has been dumped!!! She ended the week with a trip to Gullivers kingdom with her Dad.
Her counts from Saturday were such that round five of TVD went ahead as planned on Bank Holiday Monday. She, as usual is coping well so far and unfortunately Hannah will spend the weekend on the ward while she has her 48 hour infusion.
I can’t believe it is nearly June and the weather is so awful, not helping with the Triathlon training that is for sure! Please keep reading for details of the Tri which will take place on September 9th and start and finish at Wreake swimming pool in Syston.
Other upcoming fundraising events include
- 4th August - Cricket Day featuring AXA PPP Healthcare v’s Wateringbury, in Wateringbury, Kent
- 18th August - Hannah Day at The Rose and Crown pub, Tilton on the Hill, Leicestershire
If you have any auction items, donations, help or advice please contact us via the Guestbook!!!
Thankyou for your ongoing support.
Thur 17 May 2007
After being in hospital for Hannah’s birthday we ended up staying in until the following Monday. Hannah’s temperature just would not stabilise although her blood cultures were coming back negative. I was still holding out for Hannah’s wish but it seemed to be slipping away as second line antibiotics were started on Sunday. By Sunday night we were making plans to tie the bed sheets together and climb out of the window. Hannah really thought we were going to do it and was worried how we would get the bags out too!!
However Monday bought better news and the second line antibiotics were stopped as Hannah was holding her own and by 3pm we were leaving Ward 27 again with adventures to be had.
Hannah had a great time in London and made the most of being away from the Hospital. Firstly, we were upgraded to First class on the train thanks to a kind lady in the kiosk speaking to the train manager who also arranged for Hannah to sit in the cab with the driver when we arrived at St Pancras. Whilst on the train Hannah did a shift in the buffet and worked on the till! On arrival in London we hailed a cab and went straight to the London Hilton Metropole hotel, where again H made herself known and I was asked if she took bookings. Again, we were upgraded to a room on Floor 13 with a fantastic view over the city from the floor to ceiling windows, where we sat on pillows on the windowsill to watch London beneath us.
We had our tea at the Rainforest café and H wolfed down ribs and I had a burger to which H said, Mummy I can’t remember the last time you ate anything unhealthy!!! We headed back to the Hotel for Gcsf and fluconozole and an early ish night!!! The next morning H was up at the crack of dawn and we headed off for a cooked breakfast, again H ate really well, she does love a good buffet but commented that it was a good thing Grandad was not there!! The white stretch limo picked us up at 10am and took us to the London Eye followed by a drive out to Surrey for the main event. In a beautiful five star hotel with afternoon tea, we met DanI Harmer who plays Tracy Beaker in the popular TV series. She was lovely and so was her Mum and thank you so much to them for sparing the time to meet Hannah. Thankyou also to Lizzie from the Make a Wish foundation who joined us for afternoon tea, which was like being at the Ritz! (Hannah had a cheese sandwich.) At one point in the proceedings Hannah walked over to the Grand Piano and gave an impromptu performance. Hannah had worked herself into a bit of a frenzy and slept for the two hours it took to get back to the station!
Once home it was back to reality as H had to have her port accessed and bloods taken ready for her bone marrow and trephine op which took place this morning. Her counts have all come up though so the Gcsf can stop again and H’s appetite is back with a vengeance! We did have some results from the mibg today from Dr Visser. Although, the neuroblastoma is still evident, especially around the left knee, it has reduced and he said he was fairly pleased. We will go ahead with round number five and if the bone marrow is clear, her stem cells will be harvested, if not, there will be four more rounds of TVD and another mibg scan.
Hopefully H will be back at school next week and be able to tell all her friends that she has met Tracy Beaker!!!!!!!!
Wed 09 May 2007
Happy 7th Birthday to Hannah!!!!
Hannah fought it out but her temperature spiked 39.4 and we had no choice but to bring her in on her Birthday. Hannah was so disappointed to have to postpone her bowling and pizza but we will re-arrange for when she is better again.
Once in we were put in a cubicle on Ward 9 which is a burns ward. H was having real problems with her mouth which was making her very agitated and in obvious pain. She was prescribed the usual but even that did not seem to help much.
Grandma Me, Grandad, Grandma Margaret, David and I sang Happy Birthday and H cut us all a slice of her Bratz cake. We had balloons and a banner but it really did not do the trick for Hannah. She watched Mary Poppins and then fell asleep.
We did have a fellow Ward 27 inmate join us though. Jesson was in the next cubicle after his trip to Birmingham for stem cells. Helen told me they have collected enough for his mibg therapy to start. Thankyou Jesson for the lovely card you made for H, it has pride of place in her room.
Happy Birthday Hannah and sorry it did not turn out the way it was supposed to. Thankyou for all the lovely cards and gifts Hannah received for her Birthday and don’t worry H, Chris will soon be able to take you on your riding lesson!! Thankyou to Chris and those at his office who helped to raise over £100 at their cake sale on Friday 11th May.
It is now Sunday and H still in LRI. We have been on ward 14 and back again to Ward 27. Hannah was able to get out for a while on Saturday to have a bounce on her trampoline but had to be back in to sleep. Her temperature which has remained stable spiked again at 2am and second line antibiotics started on Sunday along with her third bag of platelets! She is completely p*****d off, please excuse my language and I am hoping and praying that we make it to London on Tuesday for Hannah’s wish to meet Dani Harmer who plays Tracy Beaker, which has all been arranged by the Make a Wish Foundation.
I will let you know if we manage to get out in time to go!!!!! Please keep everything crossed for Hannah.
Mon 07 May 2007
Hannah is through another round of TVD and also had her mibg scan immediately afterwards. We have to wait for the results of the scan but we remain hopeful as she is pain free and seems so well. Her eating has taken a bit of a dive but not too dramatically at the moment and she is full of energy most of the time.
We had a lovely bank holiday weekend and it was Hannah’s birthday treat. Chris, Cameron and I took H to Wicksteed Park as her request was for somewhere with rides!!!! We all enjoyed the day and our picnic and eventually the sun came out. We had an indoor barbeque at Grandma Me and Grandads cake and balloons to stretch the birthday girls day out a bit longer!
Hannah had a blood test this morning which revealed she needed both blood and platelets which she will have tomorrow so she is all filled up with blood products for her birthday!!!
Happy seventh Birthday for Wednesday Hannah!! Xxx
Sat 28 Apr 2007
Hannah’s forth round of chemo was delayed for a further week, this time, due to her Neutrophils being less than 1.0. Although it was frustrating to keep having to delay, it did give Hannah some time to put weight on, going from 19kg up to 22kg, and spend a couple of uninterrupted weeks at school. The Easter Eggs certainly helped with the weight although she has been eating like it is going out of fashion. It is either all or nothing in that department!!!!
Anyway Hannah’s chemo resumed on 26th April and she is her usual self going in and out of Hospital, as unfortunately, she is so used to it. Because of the delays it may also mean that she may well be very flat on and around her birthday as this is 7 days post chemo but we just have to keep our fingers crossed or she will be like the Queen and have two birthdays!
Thank you to my friend Emma who sent Hannah two boxes of Coco Pops over from Ireland, they will certainly keep her going for a while. And thank you for the cards and parcels Hannah has been receiving through Post Pals and all the lovely messages on the Guest Book.
I will keep you updated on round four and the MIBG scan which will follow shortly after!!!!!
Tue 10 April 2007
Hope you all had Happy Easter!
After H had her platelets, and although she did not struggle as much as previously, we ended up back in the LRI on Thursday, as Hannah’s temperature spiked. The ward was full so we had the same cubicle as for the blood last week. Hannah was going stir crazy as she could not leave the room due to being completely Neutrogena although she felt quite well. David stayed with her Friday night but she was allowed out on Saturday. We had to return each evening for IV antibiotics until Monday night when she required more platelets too!!!!
Well, H required further platelets but unfortunately could not attend school as there was chicken pox in Hannah’s class.
However, we had a great Easter break. H and I went down to stay with Chris and Cameron and spent all weekend outside in the lovely sunshine. We painted pottery, played crazy golf, went to the pub lots and enjoyed an Easter Egg hunt at Leeds Castle. As you can imagine there was a lot of chocolate involved.!!!!!!
Now we are back after Easter and the next round of chemo is imminent! H had bloods taken today to check all her counts are ok for her forth round of TVD to start on Thursday. She looks a bit skinny although she is managing to shovel Easter Eggs down pretty well.
****** Additional Update ******
Latest news is that Hannah’s forth round will be delayed for a week as her platelets are not high enough. She is in good spirits though and may even manage a few days of the new term back at school before chemo resumes.
Mon 26 March 2007
Well Hannah seems to be coping much better with this round of chemo and has not suffered with the side effects to the same degree. She has complained of a sore mouth a couple of times but has managed to continue eating albeit slightly less!
H needed blood by Friday which meant a late night. Cameron, Hannah, Chris and I left the hospital at midnight and we had to have the blood in a cubicle on another ward as ward 27 was still jam packed!
However, the rest of the weekend was great fun and included a museum trip and Sunday lunch with Grandma me and Grandad followed by a game of rugby in the garden.
Whilst Hannah and Cameron were performing their latest play for us we noticed how bad H’s bruises had got, you can see them clearly in a bluebird costume! Right enough her blood test on Monday showed a platelet count of just 15. She will be going in tomorrow for platelets. Hopefully, she will be able to spend the last couple of days before the Easter Holidays at school.
Wed 21 Mar 2007
We have just arrived home following Hannah’s third round of TVD. We ran out of the ward and down the stairs into the chilly sunshine and H said she felt like she been cooped up for a week. So far she has tolerated this round really well with although she has mouth ulcers they are not causing her the amount of pain as last time. This is helped with the mouthwash she uses and regular pain relief!!! Yesterday she was swinging from the curtain rail and bouncing on the bed. Her imagination was also working overtime as she had one Doctor convinced that she had a pony and they were training for the 2012 Olympics, admittedly she had a little help from me, well you have to pass the time somehow.
The ward was completely full, we were sad to see that there was a queue for H’s bed as we were leaving.
Hannah really enjoyed her time at school and is looking forward to being up to going again really soon. She has done so well with the amount of energy she seems to muster for school both with the work and playing with her friends. 15th March saw David’s birthday and although Hannah was starting chemo that day she sang Happy Birthday to him while he opened his presents. The weekend before H had been playing in the park and David was happy to see her using all the energy she seemed to have. We start the GCSF again on Friday and just hope her counts react well and she does not suffer as much as with the previous two rounds. She is eating well, better out of hospital than in and if Jamie Oliver happens to be reading this his next project after School Dinners should be Children’s Hospital Ward dinners, they are appalling.
I will keep you updated on how well Hannah tolerates this round of chemo. Also we are thinking of Chris’s dad who has his scan today and Cameron who has parents evening!!!!!!!!! I am sure you will make your Daddy very proud!
See you soon
Thur 15 Mar 2007
Today Hannah starts her third round of chemo. We were up to the wire with platelets as they were dropping and it looked as though chemo may have been delayed but true to form H started making her own just in time!
Hannah pulled round from the last chemo after her high temperature and it looks as though the sore mouth will be something which affects her each time. Every day saw an improvement in her wellbeing and by last Thursday she was well enough to attend school. She was rather subdued on arrival and a little overwhelmed as it became obvious just how much her classmates had missed her. However, she had a great day and has been back everyday since and is even going after chemo today and tomorrow all being well!
At the weekend Chris and I took Hannah and Cameron to Port Lymme Zoo. Cameron had a “Junior Zoo Keeper for the day” as a Christmas gift and as you can see from the picture he had a good time. He is braver than me holding that snake!!!!! We had a great day and the sun shone for us.
We saw Mr Visser at clinic on Monday and H has put weight back on and is now 21.2kg so again the whole nose tube discussion was avoided and H made is clear how she felt about having one! The latest food of choice is Kit Kats, but the old favorites remain. She has also started putting a lot of salt on her food, which is not great but makes her drink more which we still need to encourage! Hannah will have another MIBG and her bone marrow tested after her fourth chemo. If her marrow is clear, which we are obviously hoping for, we will discuss harvesting stem cells from Hannah for help with possible future treatment.
Thank you to all those who have sponsored us for the Race for Life. I am hoping H will be up to it as it should fall ok with her treatment. We have lots of other exciting things planned so I will keep you posted.
Fri 02 Mar 2007
Since my last update Hannah has been poorly again. Her mouth was sore again and she slept for almost two days which is unheard of for her. Then her temperature reached 38.3 so we had no choice but to take her to the ward.
We arrived really late and found a bed and H just wanted to sleep, however, we had to be seen by a doctor and fluids and antibiotics were administered. Hannah’s temperature reduced overnight and stabilized but we had to wait for her blood culture results.
Her portacath needle was taken out as it had been in for long enough but on accessing Hannah’s port (a procedure H is still not comfortable with) prior to her antibiotics being administered it would not bleed back. Two needles were tried and both failed and Hannah was becoming more and more distressed. In the end the plan was to give her antibiotics via a canula and try an anti clotting drug into her port. The canula was in really quickly and H was back in bed and although the antibiotics stung in the canula, H was soon back to sleep. The day had been difficult all round with H obviously feeling very low and then being poked and prodded and having needles and all over the place when you just assume the port will do it’s job.
However, the following day brought better news. H port needle was removed and re-accessed and it worked a treat. The canula was taken out and best of all she was allowed home!!!!
She has to return to the ward for three more doses of iv antibiotics but does not have to stay in. We are hoping that she has hit the low following this round and will now be on the upward turn with the help of the Gcsf.
Thank you for all the messages on the Guestbook. Hannah and I have entered the Race for Life in Western Park on July 8th and we are hoping H will be well enough to take part. If you would like to sponsor us for Cancer Research we have our own page on the race for life website. Please go to www.raceforlife.com and we have a link.
Tue 27 Feb 2007
Almost a week post chemo number two and Hannah is doing well. She coped really well with the chemo and was home by Wednesday afternoon. She has complained of tummy pains and mentioned her mouth being sore a couple of times but I think she was expecting it to be awful again and it has not been mentioned a lot! She is completely neutopenic and requires blood and platelets today on the Ward. Her platelets dropped from 118 last week to 19 and we didn’t really need the blood tests as her little legs are covered in bruises which is a sure sign! I can assure you that the roller skating and the scooter ride were not the cause of the bruises!!
Hannah’s eating has slowed down again, which was to be expected, although she has not stopped altogether. Froth and cheese & marmite panninis are still welcome although the marmite was tending to sting her mouth a little while it is extra sensitive. Pancakes have been replaced by coco pops!! And she has a small craving for turkey!! The meat not the country.
Due to H being completely flat we sadly called off our visit to Chris and Cameron and stayed put! We ventured as far as Hannah’s favourite shop, “Forget me Knot” which is walking distance from our house. It is the perfect shop for a little girl (and a big girl) and we always manage to leave with a little something.
Over the weekend we were treated to a show by the upcoming superstars, Pink Flink and Blue Flue. It was an interesting combination of River Dance and Ballet and I would like to thank Auntie Emma aka Blue Flue for her part in that.
I was not allowed to watch the rugby on Saturday as, per usual, Tracy Beaker won the viewers vote. Chris did send updates which became less frequent as the afternoon wore on, can’t think why? Hannah did recall Johnny Wilkinson from the last time we watched and asked Grandma Me if she would like to marry him. She replied, she thought him rather young for her but Blue Flue’s eyes lit up!
Thank you for all the Guest Book entries, Hannah loves them all, especially the joke about Boobies, oh no that was my favourite! Thank you to all Hannah’s class at school who left lovely messages for her. She misses you too and hopes to be back with you very soon.
Sun 18 Feb 2007
Hannah has been picking up daily since I last wrote and her weight has increased back up to 20.9 kg. She is still partial to the odd pancake or 5 and froth from Starbucks still hits the spot. Her counts came up in time for the second round of TVD to start on Thursday.
Although her eating has improved to the point where we can avoid an ng tube, there was an obvious shift in her desire to eat on the first day of her chemo and she refused breakfast that day. I wonder how much of this is psychological as she is expecting her mouth and throat to be sore as after the last dose. Once in however, she demolished 6 healthy eating, be good to yourself, fishysaurus things from the dinner trolley (you never get accustomed to that smell!!)
Hannah would really have liked to have spent some time at school last week as she was feeling so much better and had some energy (and immunity). She really misses her friends and I know they all miss her. Excellent timing as usual meant it was half term however, so we will have to see how she copes with this dose and take it from there. We have set her up a school work folder though to entice her into doing her school work. So far she has decorated it with stickers and enjoyed using the hole punch to put all the work in!!!!
The ideas for charity events are growing and we are working on these! My work raised £100 on the Caps for Kids day which was on International Childhood Cancer Day (15th Feb) so thank you to all who took part in that. All money raised by this and future events will go towards research into treating and eventually finding a cure for Neuroblastoma. I will let you know how Hannah is doing after her second round when she finishes on Wednesday.
Sun 12 Feb 2007
Hello again, things are looking better. Over the last few days our H has returned with her voice, attitude and some of her appetite. Her counts, which took so long to improve, and required more platelets, are finally where they need to be for her next round of chemo to start on Thursday.
From eating nothing she has been on boiled eggs with soldiers, pancakes and feta cheese by the tub and although she is much thinner she looks so much better than just post chemo. I feel like I work in a canteen but watching her eat is wonderful.
She has also lost all of her hair, which she is again, taking in her stride although it is obviously having more of an effect on her now she is older. She is worried what other people will think and say and often says “ I wish I had my hair back.” To this end, a wig was purchased which Hannah is most proud of. She chose the colour herself and it is a good match to her own hair, it is also much longer and fuller than her own hair was. The only problem is it makes her head itch, so kindly, Chris has fashioned a cotton cap out of one of his T- shirt sleeves and we are hoping this will help! Although Hannah has had chemotherapy before it still shocked me just how strong the drugs are to change H so dramatically from the black and white photo with the 4/2/07 update.
While Hannah has been spending time at home she has been completely obsessed with Tracy Beaker!! She has the book which has been the bedtime story of choice and also the movie. There is currently a fortnightly magazine published and H has the dvd’s from part one and part three. If anyone can get hold of part two I would be really grateful, not just for H but also for my sanity! Since Chris has been sending us copies of all the lovely messages from the Guest book I have also noticed how much H loves receiving stuff through the post, especially when addressed to her. If any of you could spare a moment and a stamp please send her a little note!!!
Some disappointing personal news, I have decided to pull out of the London Marathon this year and have given my place to someone else. With the level of commitment required to do it justice and not injure myself I have decided to continue training with a view to doing a marathon later in the year when Hannah is showing signs of recovery once more. However, Chris and I have some exciting events in the planning stage to raise money for Neuroblastoma research so watch this space.
Sun 06 Feb 2007
Hello all
Just to let you know that Hannah is at last starting to pick up after the chemo followed by the infections. She continues to have GCSF every night and the counts, albeit slowly, coming back up. We have been in for more platelets today.
Eating wise it is a constant battle to encourage her to eat anything much. The weight is falling off and unfortunately an NG tube is looking more and more inevitable. As her mouth ulcers and sore throat have cleared up she has been eating a little more. I think she has an appetite but the strange taste in her mouth makes her usual favourites taste all wrong.
I think her sense of smell has been affected too and seems more sensitive, she is not at all tactful when she tells me I smell after a run!! Her voice even sounds different.
Hannah was determined she wanted a wig this time round. Well, Chris emailed some local wig shops and today Hannah chose one. It is called ‘Britney’ and is long and a close match to the original colour of Hannah’s hair.
I will post a picture of Hannah in her new wig soon.
P.S. If you can, please give blood - it is so important.
Sun 04 Feb 2007
She had a temperature, sore mouth and throat and was generally feeling really low with an infection. She required blood and platelets and became neutropenic. She has also lost 2kg already.
So we spent the week trying to build her back up again with antibiotics and GCSF. She gradually started to perk up and with a little persuasion we were home by Friday pm. We had oral antibiotics and GCSF to give at home for another week in the hope that her neutrophil count would increase enough to give the GCSF something to work on.
Hannah has been busy with her hospital school work. She has been working on the Chinese new year and is being rewarded on her sticker chart for her excellent work.
Back at home Chris has sent us the guest book entries and Hannah loves reading these so keep them coming please.
The current drink of choice is ‘froth’ from Starbucks accompanied by a cheese and marmite panini. Grandma Me is personally known at the Thurmaston branch!
We are now keeping our heads down and hoping the hospital forget about us until the 15th February when it all starts again!
Sun 28 Jan 2007
Hello and welcome to Hannah’s new look website. Please take the time to leave a message for us on the Guest Book. H loves all the well wishes.
Hannah has already had her first dose of chemo which was administered via her new portacath. The regimen she is on this time is TVD which consists of Topotecan, Vincristine and Doxorubicin each with their own set of delightful side effects and ability to generally make Hannah feel very unwell.
Chris and I took Hannah to have her hair cut into a shorter style prior to her losing it. She initially loved it and enjoyed the whole experience of having her hair washed and blow dried. Since then however she has become more conscious of losing her hair and is worried about what other people will say!
Hannah was in and out of Ward 27 for the first 4 doses of Topotecan within about an hour or so. She went in Monday morning for her fifth dose and then started her 48 hour infusion of Vincristine and Doxorubicin. This was flushed off on Wednesday lunchtime and we were able to head home. On Friday she started GCSF to help her counts recover before the next round of chemo which will be next month.
Hannah is able to have Hospital School lessons now she is older and her school, Highcliffe have sent in her current work so she can continue with her project on St Lucia and hopefully keep up with her class mates. The Hospital are impressed by her abilities although while she is in Hospital she is obviously not feeling great therefore does not concentrate long on school work. Hopefully, she will recover enough between sessions of chemo to spend some time at school.
Cameron has given Hannah a piece of Azurite which is a health stone. Hopefully this will bring good health her way again.
I am also continuing my training for the London Marathon again this year. Not sure when I will fit it in but I am raising money this time for Wishes 4 Kids, who are a Leicestershire based charity who arrange special treats and days out for children with life limiting and terminal conditions. For more information on their work please see wishes4kids.org. I will be setting up a page on justgiving.com and will let you know when I have done this via the website.
February 15th 2007 is International Childhood Cancer Day and on that day is “Caps for Kids”. It’s a really simple idea, just wear a cap, wig, bandana, hat etc to work/school on that day and pay £1 towards research into the causes and treatment of Neuroblastoma. For more information on supporting this please see www.georgies-fund.com
Thank you for all your support which helps Hannah to continue to fight Neuroblastoma.
For more information on the chemotherapy drugs that Hannah is having please have a look on www.cancerbackup.org.uk.
Fri 12 Jan 2007
Her reading has improved massively and she is now using punctuation and emphasis in the correct places in her books. Her writing and spelling also continue to develop and she is generally doing well at school. Her “attitude” is also starting to develop however she is as loving as ever. She was a star in the school play and was a narrator for “Barney the Church Mouse”. She really enjoyed the preparation and delivery of the Christmas play this year.
Hannah woke during the middle of the night just before Christmas screaming in pain. She told us the pain was in her left knee and we administered ibruprofen, gradually increasing this to oral morphine to help with the pain as it was keeping her awake in the night. The Sunday before Christmas she came into bed and asked me to scratch her back. As I was half asleep I complied then thought I had better take a proper look. Once the light was on I could see she was covered in Chicken Pox!!!!! She dealt with this in her usual brave way and did not scratch her spots!! It did mean that she missed the last few days of the school term which are the best of the year!
Hannah had another CT scan on her Grandad’s birthday 17th November. At her next clinic appointment, the results of this showed no change. At this appointment she also had more catecholamines taken and an MIBG booked in to check her knee. Due to the arrival of the chicken pox the initial MIBG date was put back to the 9th January. Although this was frustrating it allowed us to focus on having a great Christmas and New Year, which we all did.
Santa did us all proud and Hannah made it to midnight to see in 2007, she was more alert than any of us. Christmas was also special as Auntie Emma was able to take a full week off which has been unheard of in previous years due to work commitments.
Hannah’s catecholamines came back slightly raised, not hugely but enough for Mr Visser to be concerned. However, the results of the MIBG on the 9th and 10th January confirmed our worse fears. Disease was back in her left knee, left femur and lower ribs. Hannah is complaining of pain in her tummy, which we now know is being caused by the disease in her ribs and looks a little pale. Apart from that, she is fit and well and this is how she will go into the regimen of chemo she will face to fight this again.
On Monday 15th January she is due to have a portacath fitted instead of the Hickman Line she had last time and chemo will closely follow. We have to speak to Mr Visser to confirm the protocol Hannah will follow this time and the time she will spend in Ward 27. I will update you when I know more I just hoped never to be writing this.