More details on High Dose Chemotherapy and Stem Cell Transplant

Ciara underwent a number of tests over the last couple of days in preparation for the next stage in her treatment. The name of the procedure as a whole is Haematopoietic Stem Cell Transplantation (HSCT). It is a very risky and potentially life threatening procedure, however there are distinct advantages to the procedure that improve chances of long term Neuroblastoma survival.

This treatment is broken down in to the following steps:

Day -8. Conditioning

In a couple of weeks, Ciara will go in to the High Dependency Unit at St. John's Ward in Crumlin. She will be give a very high dose of chemotherapy consisting of the drugs Bulsulphan and Melphalan. These drugs destroy the bone marrow and will make Ciara very sick. She will have nausea, vomiting, a very sore mouth and diarrhea. The mouth can get so sore that morphine is often administered. Ciara will have a nasogastric tube almost immediately.

Over the next few days Ciara's blood count will plummet, risk of infection will be at the absolute highest and strict isolation will be put in place. NO ONE can visit her apart from myself, Yvonne, and a third person, Yvonne's mum. Once the white cells and platelets reach a certain level, called an aplastic state, she will be give the transfusion, which happens on day zero.

A possible side effect of the drugs is a liver disease called Veno-occlusive disease (VOD) which occurs in about a third of stem cell transplant patients. This is a serious disease and in extreme cases can be fatal. Ciara will be part of a clinical trial of a drug called Defibrotide. She'll either be on it constantly, or only if she shows symptoms of VOD.

Day 0. Stem Cell Transfusion

A couple of months ago we harvested healthy peripheral bloody stem cells from Ciar's bone marrow. These were put on ice in preparation for the transfusion. This is a simple intravenous transfusion that will go in to her freddie. A couple of the side effects are black wee, from red cells broken during freezing, a bad smell. Ciara will smell like rotting sweetcorn for a while! Transfusion takes about a day.

Week 1 - Week 6-8. Recovery.

Over the next few weeks, Ciara will require intensive treatment as a result of the severe and potentially fatal decrease in white cells and platelets. She will have a regular administration of antibiotics and will require a strict "clean" diet. Only myself, Yvonne plus Yvonne's mum can be with Ciara over these next few weeks. Mary, Yvonne's mum, is our "third person", an will be performing a vital role in Ciara's recovery.

During this time, we need to follow strict isolation rules. I've just read the guide and it says that we can't even bring books in for ourselves unless they're pre-wrapped and have a plastic cover after unwrapping. I've got a stack of books built up for the duration! I wonder if putting them in the freezer will help? Ciara's food will be prepared on-site and any food ciara particularly likes will be bought for her. Big Ted will need to be hot-washed DAILY! How will he survive that!

Everything's on the move and we're back home...

...not much else to say! She's back on form and bodily functions are getting back on track.

Tuesday and Wednesday will be a days of tests, including a new one, an EEG, electrodes on the head, sleep analysis, that kind of thing. I have no idea why and wouldn't surprised if it didn't even happen. She had blood counts done over the last couple of days and her levels are higher than they've ever been (good thing) so I would expect the mega-therapy (high dose chemo) and transplant to be happening pretty soon. Will keep you posted.

Graphic Detail Alert!

Ciara is feeling much better today and is nearly back to her normal self. Pretty chatty and jokey so that's good. She's started to make progress in the poo department too after the indignaty of a supository earlier (finally cleared by St John's) and has been eating and drinking well.

This was after a pretty tough night. The x-ray showed a large impaction of poo and she'd been vomiting lots and lots of bile. I noticed what looked like faecal matter in it at about 2am so she had to have a nose tube put to draw off liquid from her stomach. The tube was in for about an hour before she sicked it up again.

The vomiting stopped around 4am and she's been gradually perking up since then. Wee output is a bit low still, not helped by neither Yvonne nor I being good catchers, but depending on how well she does over the next 24 hours she should be out tomorrow night, fingers crossed. We are finally getting oral laxitive to work but it takes a day or so to have any effect as it tries to ballance out the system quite gently.

All sound pretty yucky when typing it but I seem to have become immune, I didn't feel squeemish at all! Bodilly functions are fascinating!

Xraying a poo

We finally managed to talk to someone today who seemed to listen to our concerns. I told the nurse that the surgeons told us to get our GP to give her an enema. She was surprised at this and as I had guessed, this hadn't been cleared with Oncology. They don't want this to happen until she's been fully assessed in case we tear something or give her an infection. Good thing we checked! Yvonne and I are getting pretty good at this Cancer Parent lark.

So we're up at Portlaoise waiting for an xray and blood count. As she's not drinking properly and is vomiting she will be put on fluids as well. Her consultant at Crumlin will then decide what to do next.

Ciara is quiet at the moment, not her normal chatty self and thoroughly peed off. At least she didn't have to hang about in the very packed A&E. She had the red carpet treatment straight into her own room, complete with giant lava lamp, disco ball and jungle slides projected on the wall!

Not a great couple of days

As mentioned before, Ciara was constipated before her surgery and managed to go the day after. That was Saturday and she has'nt gone since. She's been sore and complaining of pains all over since yesterday and on the rare occasion we can pursuade her to eat something, she isn't able to keep it down. This includes medicine, so she is currently without pain relief. She's slept alot as well, that is when she can get comfortable.

The hospital don't seem too concerned but it is upsetting. She hasn't complained of pain this much since before she was diagnosed, and so all the old worries and fears are coming back. I'm sure it's just constipation but we need to get it sorted nevertheless.

Her surgeons have suggested an enema. We're not sure if they checked with oncology whether this was okay, I'm guessing not, so we are waiting to here back from the hospital before going ahead.

Home again

Ciara was back home yesterday afternoon after spending the night over with us in Ronald McDonald House.

On Monday night she was moved out of her own room into a two bed room sharing with a baby (12-18mnths so pre-toddler kind of thing I guess). Ciara is not a fan of babies and goes nuts when they cry and we told them this when we first went in. She will have to get used to crying babies in December, but in her own time, and not when recovering from major surgery!

Yvonne had the smart idea of asking if Ciara could stay with us for the night. This was ok by the surgeon so we packed up and headed over to RMcD House.

Back home yesterday she was pretty sore after the drive back and could only get comfortable in bed. She slept a lot yesterday afternoon and slept well through the night. She seemed pretty happy this morning having breakfast in bed though.

Up on her feet

Ciara had a relaxing day yesterday and received some visitors. She was a bit sore in the morning but as the day progressed we were able to stop the constant morphine feed and have it set to demand only. She started eating yesterday too, starting with a few nibbles of toast and building up to coco-pops (bowl and bar form) by the evening. She's in great form too, and is starting to get quite chatty now.

Today she's been up on her feet and has managed to walk to the loo and back. There have been rumours of going home tomorrow but the are only rumours at this stage. The hospital school came round today and gave Ciara some homework to be getting on with. We're going to have a few weeks off now and it would be nice if Ciara was able to make a few visits to the local montesori to catch up on some peer fun. We shall see...

Out of ICU

Ciara's now out of ICU and back on Our Lady's Ward. She's a bit croaky and groggy still but in good enough form. She's chatty now and then but is sleeping quite a bit. Epidural came out and she has a morphine feed at the moment.

We're slowly getting back to a normal Ciara-level amount of tubes going in. Normal being a tripple broviac straight in to her venous system. Our normals are definately abnormal. .

Earlier today they were concerned about her levels of pain and tension and were thinking she may be in for another night in ICU, but that was all sorted out once she managed to have a poo. Now I've been to the elephant enclosures at London, Dublin and Bronx Zoos, but I can tell you I've NEVER seen anything like this. No wonder she was in pain!

A comfortable night

Ciara slept well and only woke up a couple of times to complain about a crying baby. She looked so sad and annyoed this morning when we went to see her, she broke our heart.

She started complaining of being in pain but it wasn't from the op. She's become constipated and this was causing great stress. She was given more painkiller that knocked her out and is going to have a suppository to give her a bit of relief.

She will have her epidural removed later today but will be given a crossover painkill beforehand. She will then be moved up to the regular ward.

Just finishing off

Just spoke with the surgeon. All went well and they are just finishing off. He recons he was able to remove 99.9% of the tumour and what he saw was totally dead. Looks like the chemo did its trick.

She'll be in recovery for an hour or so and then in to ICU where we can give her Big Ted.

Just gone in to theatre

Ciara is now in theatre and will be there for the next few hours. She had a pre med which made her go all hyper and giggly, followed by hyper and beligerent. I don't think they'll be using that med again.

Ciara is definately losing a kidney. Luckily the results of the split function kidney test showed that the one she's keeping is kind of behaving itself. Yvonne was expressing her relief at this to one of Ciara's oncologists, who then thought it was a good idea to tell her how risky the course of mega-therapy (intensive chemo) will be to kidneys as well as the rest of renal system. Crappy timing as it brought us both down. However we've always asked to be kept in the loop. That's the pay-off I guess.

After surgery Ciara will spend a day or two in ICU. We will be able to visit her but can't stay with her at night. That will be tough for all of us. Following ICU she will be back on the surgical ward for a while.

She went in looking so healthy and happy. I think it's going to be a while before we see her that chipper again.

Night before surgery

Ciara is settling in to Our Lady's Ward, Our Lady's Hospital on the night before her tumour surgery. It's a different ward to what she's used to but it'll do.

Ciara's surgeon tomorrow will be Professor Corbally. We spoke to one of his team this afternoon who briefed us on what's ahead. We had to give consent for the surgeon to remove a kidney if needs be. It would appear that this is likely now but not definate. As the doctor said, if it needs to come out it needs to come out, even if the other one isn't fully functional, we'll just have to cross that bridge if we get to it.

It's a long and risky procedure and may take anytime from an hour to over three hours depending on what they find. Surgery will be around twelve tomorrow but that's not definate.

Ciara's immense energy levels are a great thing but we're exhausted keeping up with her. She's on the go non-stop from 7am to 9pm, now with no nap during the day. Musn't grumble though. Her energy is what makes her such a fighter.

Ciara and I are watching Jurassic Park III for the thousandth time. At least it's not Jurassic Park I, which we've seen a million times. Yvonne is off for a walk to have a break.

A big thanks

A big thanks to everyone who has picked things from Ciara's wishlist. It's going to be a great comfort for her while she's laid up in bed unable to sit up properly. She's going in to surgery next week and it will be a couple of weeks after that when she has the bone marrow transplant. I will have to keep them well out of the way before then otherwise she'll trick me into opening them!

Thanks again.

Ciara's First Look at a Dinosaur

This is the moment Ciara first set eyes on a real dinosaur (kind of).

(Cousin) Nick...if you're reading this, can you send me a message on Facebook so I can get your email? Would be quicker than going the asking-my-dad-to-ask-your-dad route. I tried an FB search but there are a millions of you!

And now...the pictures

Here's are the pics from our trip to London. Click on the pic to go to the album, I hope you all enjoy them.

Ciara's Trip to London

Will post some vids in a bit. They take longer to edit and upload!

Back in dublin

Just landed in Dublin. It took a while to get off the plane as Ciara had to say goodbye to the pilots in the cockpit. Last night she lasted until we got into the taxi back to the hotel at 9.30 when she crashed. She'd just had a 12 hour fun session with no nap and was just brilliant all day.

I'm going to take this opportunity to say a massive thanks to Peter and the rest of the Bubblegum club, Fiona, who took time off work so that Ciara could have a nurse along and who nominated Ciara for the Bubblegum Club treat, everyone at Jury's Hotels and especially the staff at Jury's Kensington and everyone else who mad.e it possible for Ciara to have the best trip ever. Words are not enough to say how grateful Yvonne, Ciara and myself are. The trip will make the tough times ahead a million times easier.

Thanks again,
The Tucker family

Slight detour

We didn't go directly to the river cruise. We took a detour to have a go on a merry-go-round as demanded by her ladyship. We missed the boat because we had to play on a nearby playground and so we were able to kill time at the Aqaurium...which of course she loved to bits.

The boat trip was a big success and Ciara enjoyed shouting "echo" under all the brdges...

After a quick sprint round Hamleys we are sitting down to dinner at the Rainforest Cafe. She's just about to have happy birthday sung to her by everyone. Well it's only a little fib...

All of us with one exception are totally knackared. I think Ciara wants to go clubbing next.

Where to start?

First off Ciara enjoyed a quick open top bus tour while we waited for the natural history museum. That went round a big block of knightsbridge and dropped us off back at the museum. Of course Ciara only had eyes for the dinosaurs, which she loved. It took us a while to convince her to see the animatronic t-rex. It was a bit loud and scary for her but she did poke her nose round the corner a couple of times.

After raiding the museum shop a ton of dino stuff, we went for a cup of tea in the museum members room. It would appear that Ciara is now a member!

After that we walked round to the science museum to see a 3D imax dinosaur movie. It was a bit painfull for me to have to rush past the space gallery and all the vintage computers...but I'm not here for me!

Just had lunch and are just about to take the bus to the river for a cruise...

Dancing in the aisle

Ciara loved Stomp. I think the audience were more entertained by Ciara dancing in the aisle than the performance on the stage! We had to leave a bit early though as Ciara wanted her hot chocolate in bed. I guess there's only so far you can push a sick four year old in the pursuit of fun.

Ciara overcame her fear of hotels, or ho-tails as she calls them, once she realised what they were. While at breakfast we realised that this is Ciara's first stay in one. She keeps laughing at the small single serving stuff and tiny toothpaste tubes!

We'll be off to the natural history museum in about an hour, then the science museum, then lunch, then up the river, then maybe the Aqaurium...

Busy day ahead then...

Stomp

Been up the london eye, eaten lots of candyfloss, and we are enjoying a beer on The Strand before going to see Stomp.

Ciara is not drinking a beer by the way.

Just landed

We got to heathrow safe and sound and are sitting in a people carrier on our way to the hotel. Ciara enjoyed the flight and is now constantly shouting "we're going to the ferris wheel! We,re going to the ferris wheel!!"

We will be staying at Kensington Jury's and we have about thirty minutes to get rid of her new phobia of hotels!

On our way

We're on a way to London! We're cruising along at 50km/h at an altitude of 3 foot in a Variety Club bus. Our flight is a 1.40 and we've spent the last hour just trying to get out of Athy...

Ciara was told about her trip last night and is going up the wall with excitement. She seems to be afraid of hotels for some reason. That's a new one on us and could be interesting tonight!

Global Finger Crossing

To sum up, Ciara needed her platelets to be over 50 to fly. Her doctors said if she was over 40 today they could transfuse to bring he up to over 50. On Wednesday she as 21, Friday she was 23...not looking good....Today it's....80!!!

Off to London tomorrow then!

Stage School at the Mall

Today Ciara was lucky enough to catch a demonstration held by a local stage school. She loves this kind of stuff and had a great boogy along with the boys and girls from the school. It looks like my dreams of her becoming an astronaut may be in vain, I think we have a performer!