Dinosaurs for a sick child appeal

Time for a shameless request for stuff: At the end of September, Ciara will be going in for a bone marrow transplant. This involves a monstrous 4 to 12 WEEKS in isolation where she is going to be very sick and very bored.

This will happen about two weeks after she has surgery to have the tumour removed. So all in all, a very tough couple of months requiring a huge amount of shrink wrapped entertainment. So if you are feeling even more generous than you have been already, send Ciara something from her new Amazon wish list. It's a very dinosaur related wish list, but then she's a very big dinosaur fan.

Ciara's Amazon Wish-List

Note:We've chosen Amazon because DVDs come shrink wrapped. While she's in isolation everything has to be new, this includes clothes, toys and books.

Could it be marshmallows?

Anyone who's seen Ciara recently comments on how, erm, lively she is. She always has so much energy and at certain points of the day she goes completely insane. I think we've managed to pinpoint it to marshmallows. One or two of them and she's running around making a noise like a gremlin and literally climbing the wall. While it's fun for a few minutes watching her screech and squawk around the house it does get a bit tiring, so we need to ween her of the marshmallows. Could always bring them out again as a party trick though.

Ciara had day one of TVD #3 today. It was a day trip and went well. Took a while to actually start the chemo but she was happy enough watching Winnie The Pooh and the Halloween Heffalump three times in a row!

We've been given a surgery date of 14th September and there will be lots of tests again between now and then I guess. Some renal tests are on their way this week to see how her poor wee kidneys are holding out.

2nd Harvesting Done, More Chemo next week.

Ciara's levels came up quick enough and we were able to ahead and do the second stem cell harvest today. Getting the canular in her hand was very stressful, the poor thing screamed the place down and fought to stop it happening. Once it was in it went well and she won't need to go in for a second day.

It's now been decided that Ciara is going to have a third TVD chemo session before she goes for surgery. Not too disappointed about this, if it can get rid of the last 1% of non-tumour cells then it's a good thing. Apparently when her first MIBG was done, the cancer cells lit up like a Christmas tree and Dr Breathnach said he'd never see it so bad. Now, after her recent MIBG, you can hardly see anything at all! All very positive.

She's off the 'zappy pen' until after chemo so it gives her a break from the nightly injections. Next week's chemo will be day trips from Monday to Thursday and she'll be admitted on Friday for the weekend treatment. Back home hopefully on Sunday.

Significant Improvement

 Yesterday we heard from the Hospital that the recent tests showed significant improvement. A huge reduction in cancer cells and only a small amount of non-tumour cancer left. The surgeon is happy to go ahead with surgery as soon as Ciara is fit enough. Before that happens, another session of stem-cell harvesting will happen but again, we need to wait for Ciara's various levels to be high enough to continue. This generally means her producing her own haemoglobin and platelets again without relying on a transfusion.

Last weekend Ciara was a bit down in the dumps, she had a bit of a cold and was getting understandably upset over the amount of times she's had to go in and out of hospital. Not many people can relate to having a general anaesthetic on Thursday, only to have another one on Monday. I can imagine how pissed off I'd be if it was me. Ciara had been wetting herself quite a bit recently and we've asked the psychiatrist what he thinks of this. He reckons it might be related to the treatment as it happens so quickly. It's often a case of Ciara saying "Oh No!!", then it happens. We'll have to check it out with the docs (note to self).

Monday was a long old day and I can't imagine how tiring it must be for the poor wee lamb. Never the less, the following day she was up with the larks and raring to go and she must have loved not having to go anywhere. The weather has been kind to us this week and we've managed to get out and about, and we found a new playground last weekend. We've already been there twice and I reckon we'll be off there tomorrow too.

Results

We got the results for the MIBG on Monday and it shows that while she's not down to just the tumour yet, the secondary tumours are reducing.

There are no results from anything else yet but we will post when we know.

Radioactive Girl 2

For the last three days Ciara has been radioactive and Yvonne has been away. Ciara and I were up on Wednesday for the dye injection then back up yesterday for the scan itself. The time between Ciara going under general anaesthetic and coming out of the recovery room were extremely lonely and I would not recommend doing it alone to anyone. It was great to have Ciara back with me though.

She had a transfusion afterwards so we could avoid coming in again today. We both got home at about 10.30 and went straight to bed with Ciara deciding to join me. Unfortunately I was working until about 3.30am to appease Major Client. Small companies are hard bloody work! Yvonne was back today and we managed to get a quick trip to the park before the clouds broke again.

We're yet to receive the results of the scan yet but we expect them next week. Ciara will be in Portlaoise on Sunday (Yvonne's birthday) for a full blood count before going back up to Crumlin on Monday. She is in for more bone marrow aspirates and trephines so another general for her! Still a transitional phase at the moment, we're deciding whether more stem cell harvesting is required and if she's ready for surgery. Hopefully next week we'll know more.

Back home for a couple of days

We're back home after TVD chemo number 2. She went in the same way she came out. Completely full of beans and raring to go! Yvonne and I kind of want her to at least be a bit tired or sick otherwise we're not sure anything's happening at all! We have heard though that some kids take to TVD very well and don't get sick at all. Ciara would seem to be one of those kids.

This Wednesday Ciara will be having the MIBG radioactive dye thingy. That will be day unit treatments so back home afterwards. She'll miss her mum though as Yvonne is going to have to make herself scarce. Can't have radioactive Ciaras running around a pregnant woman!

Ciara Meets the Leinster Cup Winners

Busy day for Ciara yesterday...she met members of the Dublin GAA Football team, winners of the Leinster cup last weekend. They came round the ward and had their photo's taken with a number of kids here. Ciara was a bit different, as she was the only one who appeared in three national papers, the above picture is from page 2 of today's Mirror.

There have been calls from all over from people who saw her in the papers. Even her Grandad said that maybe Dublin ain't so bad and might start shopping in Arnots and Yvonne said that this is the last picture of Ciara she expects to see in the Sun!

To cap the day, presenters from The Den (kids TV) came in and Ciara had a laugh and a boogey with them. Nice end to a great day...

Stem cells harvested, now more chemo

 

Last week Ciara finally had her stem cells harvested. The week started with Ciara going up to Crumlin to check blood levels to see if she was ready for harvesting. Monday's results showed that she was close but not close enough and to come back in the following day. Same story on Tuesday, close, but no cigar. Try again tomorrow. Wednesday the levels good and she went ahead with the harvesting. This involves being connected to a large machine which draws out her blood, runs it through a centrifuge, and puts it back in once the stem cells have been harvested. This is a three hour process of constant monitoring and Ciara got through it very well. She needed to come back in on Thursday to finish it off but all in all, quite uneventful!

Her blood count on Thursday showed signs that she would be ready for her next chemo session on Monday, and sure enough, it was. She's on day two of her second TVD session and is doing very well. She's coping with the TVD so much better than the last protocol and has no sickness whatsoever. Her energy levels are something to be experienced to be belived. There's no stopping her! She does however go so far as to crash in the afternoon yet refuses to nap, causing much stress to poor Yvonne. She's a rock though and does herself proud.

Another scary few days

Ciara was in Crumlin on Monday for her MRI on Tuesday. By Tuesday lunchtime, Ciara had been fasting since 9pm the previous night and, as you can imagine, was very hungry. We managed to distract her with lots of playroom fun though. While I was working in her room Dr Breaneach came in with a bunch of new doctors and wasn't his normal cheery self. He sat on the bed and told me that the bone marrow aspirates taken the previous Friday showed cause for concern. I asked him to wait for me to get Yvonne before he carried on.

To recap, the last results showed that her marrow was clear of neuroblastoma. However this results showed 40% neuroblastoma cells. Dr Breanach said that neuroblastoma is very patchy, as a result, the last aspirates could have just missed everything and come up clear. So from this it would be difficult to tell the progress, if we'd missed all the cancer last time, we wouldn't know if this one was less than before. There was also a chance that the cancer had come back between the previous and recent aspirates. He ordered a urine catechlomines test which would give a biological view as to what was happening. We managed to get Ciara to wee on demand and this was sent off to the lab.

Ciara was shortly sent up for the MRI where she reluctantly had another general anaesthetic. We went off for lunch and to chew our nails, waiting for the worst from the urine test but of course hoping for the best.

Five traumatic hours later, the results of the urine test came back. A normal level of catechlomines is 14. When Ciara was first diagnosed her level was 150. A test a couple of months ago, after chemo, was 70. Tuesday's results were 20 something, nearly normal! So why the positive results to the bone marrow aspirates? The biology didn't match the morphology. Dr Breanach asked himself this question and pulled up the results of the previous aspirates. The comments said that there were "40% abnormal cells". Chemo damages bone marrow cells, and so does cancer. In the first aspirates, abnormal was interpreted as cells damaged by chemo, not cancer.

Once Ciara had recovered from the GA, we were sent home. There was a brief delay in getting home as some idiot had left the lights on in the car and the battery was flat. The same idiot was even told the day before that his lights were on, he checked the car still started then forgot to turn the lights off!

We still needed to wait for the result of the trephines (a bone core) taken from last Friday. And of course we needed to wait for the results of Tuesday's MRI. Both of these would come back Thursday, today.

Today was very anxious. I worked from home but found it difficult to concentrate. By 5pm would couldn't wait any longer and chased up the hospital. A call came back a few minutes later.

The MRI showed excellent progress and the trephines came back clear, no neuroblastoma. So it's looking more like the recent aspirate tests were miss-interpreted as neuroblastoma rather than chemo-damaged cells. The haemotologist did say to Dr Breanach that it's very difficult to tell the difference between neuroblastoma cells and chemo damaged cells. Another new test will be carried out to try and clear up the confusion with the results due maybe Friday. In the mean time, Ciara will wait for her blood count to come back up before the next TVD (chemo session). If they come up early enough she may be OK to go ahead with the stem cell harvesting before the next TVD. Surgery is to be held off until further notice, but we expected that.