Friday, July 27, 2007

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.

Sunday, July 22, 2007

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!

Friday, July 20, 2007

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...


Tuesday, July 17, 2007

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.

Thursday, July 05, 2007

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.