The last week of Delayed Intensification

 After a very quiet weekend we were back in hospital on Monday as Celia needed a blood transfusion. All was going smoothly until Celia got up from her chair and forgot she was attached to the drip (she was too engrossed in her craft activities with play therapist Liz as you can see) and the tube got disconnected from the bag of blood. I heard the screams and ran in to find Celia very distressed as there was a lot of blood on the floor. I initially freaked out as it took me a few seconds to register where the blood had come from! We calmed her down but it meant starting over with a fresh bag of blood as the original one had to be thrown out due to risk of contamination. They assured me it wouldn't delay things too much as her blood group was in stock but it took nearly 3 hours for another bag to be brought up from the blood bank so we ended up being at the cancer centre for over 8 hours. Max went to a friends but I had initially told her he would only be there for the morning and it was after 6pm when I collected him. Mary was of course fine with the situation but I felt very guilty. I also hadn't packed any dinner for Mabel so I stole a Weetabix from someone which was of course something else for me to feel guilty about. Mind you, on the positive side, she was so hungry that she actually said her first words as she started shouting "mama, mama...." repeatedly until I fed her!    
The blood transfusion has been very successful as her blood tests on Wednesday showed that all her counts had risen which is very positive and means we may be able to start the next phase this week (Interim maintenance). Around 50% of children experience a delay but tomorrow's blood tests will confirm if  we can start this protocol on Wednesday.

Celia has been so content staying at home and playing with Max and thankfully so has Max. We can go out to the park but I am wary of taking her places where there are too many people as she is still so neutropenic. They have developed so many new games over the past few weeks it really is a joy to sit and watch them play together. Making pixie dust and berry cakes in the garden is the favourite right now.

Her creative side still amazes me as she most certainly doesn't get it from me. I found her making these jewellery people from her bracelets and necklaces the other day and it was a jewellery butterfly the day before which was fantastic considering she wasn't copying from a picture.

I finished the week off by having a girl's night out. It was a friends birthday and I even managed to end the night on the dance floor. Must be a good few years since that last happened!   

A close one

 As the title suggests we very nearly had a hospital admission on Friday but luck was on our side and we got to go home. I say luck as I think we were only released because it was a Friday and they like to clear the wards out at the weekend. Standard protocol states that a temperature of 38 or above means admission and 24 hours monitoring and Celia's was 38.1 when she woke up. It did drop steadily during the 4 hours we spent in the cancer centre and I was confident she didn't have a fever so I was very relieved plus it would have scuppered our attempts to break the record of having no hospital admissions during the whole 2 to 3 years of treatment (apart from the 9 days at the start of course) and touch wood, we are still on track. We haven't actually met anyone else in the cancer centre who has got this far without any additional overnight hospital stays so she really is doing amazingly well.

I was also pleased to find out that she didn't need another transfusion as we'd been warned to expect several over this 2 week period and she was very pale and teary on Thursday especially doing her blood tests, but considering they were done 3 times due to the first 2 not working, that is hardly surprising - her little hand looks like a Dora finger puppet show again!
 She is still extremely neutropenic of course (low white cells) but  platelets and red blood cells are doing what they should.
Mabel also had a high temperature this week (38.7 on Thursday) and was sick a few times but whatever she had seems to have passed and not been picked up by anyone else.

Celia recovered well and insisted we take our monthly shopping trip down to Sandringham farmers market on Saturday so we spent a lovely morning bumping into friends, playing and eating massive scones with cream and jam in the glorious spring sunshine.
We took it easy today and I only left the house to go for a run and I can honestly say I have never enjoyed running as much - perhaps the views may explain why running is such a pleasure these days! ........

More Transfusions

I'm glad to report we ended last week relatively drama free (well apart from Celia cutting her finger on Max's toenail which sounds minor but because her platelets are so low, it was still bleeding after 4 plasters). The nurse came out to give Celia the thigh injection on Thursday, Friday and Saturday but this time Celia had no problems and even laughed while she did it.
She has been in good spirits but not well enough to go to kinder and she still throws a tantrum if I try to leave the house without her but she is an angel to deal with compared to Max. Max's tantrums are becoming daily and he is at that stage where everything I say is met with "NO, don't want to!" or worse!

We ended the week by going round to our friends Niamh and John's for a delicious Sunday roast and the kids had a ball playing in the glorious Spring sunshine although Celia did get very teary towards the end of the day. Little blood spots (petechial rash) had appeared on her ear that morning, which is sign of extremely low platelets, so I was amazed she held up as long as she did.

We were warned to expect various transfusions over the next 2 weeks so I didn't even bother going to the local hospital today for blood tests. Instead the whole family headed up to the cancer centre and she did indeed need a platelet transfusion (she had her lowest count since second week after diagnosis) but as I said above, this is to be expected at this stage in the protocol.

 

A week of falls

Well as you can see Celia had a nasty incident with a pavement on Sunday. We went to Hastings on the Mornington peninsula for a walk through the wetlands and after lunch an unusually exuberant Celia ran down the main street and tripped (her feet are still a bit clumsy due to the chemo). Her knees, hands and face were cut but luckily it looked worst than it was as blood filled her mouth and nostrils. Because her platelets and neutrophils are so low right now I wasn't sure if the bleeding would stop or if she'd pick up an infection but she is healing well.
Celia refused to go to playgroup on Monday because she didn't want anyone to see her face but by Tuesday she was happy enough to have a playdate with Bettie.
 The playdate, however, very nearly didn't happen because I had to dash to the emergency department as Mabel fell down the whole flight of stairs. I was convinced serious damage had been done as the noise of her head hitting the wooden floor was deafening and she only cried for a few seconds then went very still and made no sounds at all. She immediately fell asleep in the car and I yelled at Celia to keep her awake. The A&E doctors saw us straight away and by this time she had started to move and make some noises. They sent us home (via the Phlebotomy department as had to get Celia's bloods done that day anyway!) and asked me to observe her for signs of concussion but she was fine, thank God. Then just to top off my day the hospital rang to say Celia's blood counts were really low and she'd need a blood transfusion the next morning - did I also mention that I had sinusitis all week? Roll on the weekend!
So yesterday was another full day in the cancer centre as the transfusion took 7 hours by the time they had done more finger pricks, ordered the blood, set up the drip and administered both chemo drugs.
 I am pleased to report, however, that at long last they are giving Celia gas before her injections and it worked a treat so they've promised she'll get it from now on which is a huge relief for both of us.

The only other major thing happening last weekend was a general election but considering how diabolical both PM contenders were, plus the fact that we can't vote, I wasn't really that interested and judging by the front page of the main broadsheet newspaper the day after the election, nor were Australians! (it doesn't matter whether there's an election, nuclear war or mass genocide, every week the front page is dominated by Australian rules football. I sooo miss the Sunday Times!) 

Happy Birthday!

 Celia remained in good spirits last week so in anticipation of her being OK on Sunday (her 5th birthday) we did a bit of baking and made a loose arrangement with 3 kinder friends to go to a showing of the Little Mermaid.
When Sunday came around she had a bit of a cold but the excitement of the day kept her spirits up so we went to the cinema on a beautiful sunny 24 degree day where we met Bettie, her best friend; Dylan, her boyfriend(!)   and Ella, another kinder friend. Max came too and was totally enthralled as it was his first cinema trip.
 Meanwhile, back at the ranch, Andy and Mabel laid out a birthday lunch complete with chocolate birthday cake which was another first (Andy's first cake) and it was a lot more successful than my feeble attempt two years ago for his 40th.
By 2pm birthday celebrations were over which was a relief as we'd been to a party the night before and a 10am screening with a bunch of pre-schoolers is not the ideal way to sooth a sore head!
Tuesday's blood tests showed that Celia's neutrophils (infection-fighting white blood cells) had recovered so Wednesday's visit to the cancer centre went ahead. She was first on the lumbar puncture list so we were there for 8am and didn't leave til 5.45pm as she had to get 3 different chemo drugs and be on a hydration drip the whole day. I asked why the drugs couldn't be administered while she was under the general anaesthetic and the reason is a safety precaution (to prevent any chance of a drug mix up) so Celia had to withstand a new traumatic method of administration which involved the chemo being injected into her thigh. This wasn't actually painful as they inserted a 'butterfly' tube under the anaesthetic, but when she caught sight of the huge needle she got hysterical again. The play therapist tried for about half an hour to calm her but I think that just gets her more worked up so the next day when the nurse came to our house for the thigh injection I told her to do it quickly while I held her. As you can see Max was witness to all this drama but once he had quizzed the nurse about what she was doing he seemed OK with the situation! She got the thigh injection on 4 consecutive days and if her blood counts are high on Tuesday this will be repeated next week. Happy Birthday Celia!