Tuesday, December 14, 2010
Friday, December 10, 2010
Wednesday, December 1, 2010
Friday, November 26, 2010
Thursday, November 25, 2010
Tuesday, November 23, 2010
Thursday, November 18, 2010
Thursday, November 11, 2010
Monday, November 8, 2010
Thursday, November 4, 2010
Sunday, October 31, 2010
Wednesday, October 27, 2010
Saturday, October 23, 2010
When I stop to think about our lives and where we've ended up I can't help but be a little surprised! Lucy especially has certainly taken us places and introduced us to people that we would never have otherwise known. And it is she who, despite her youth is having a great impact on people.
Adam stayed overnight at the hospital, and as I was running a little late for him to get to work he asked if a volunteer might be able to come and sit with Lucy for half an hour. A lady arrived in her signature pink stripey apron in record quick time. On meeting Adam, she mentioned to him that she had been a volunteer for 3 years but never been to the oncology ward, as she had always asked not to go there. She had lost a brother some 50 years ago to leukaemia, and just didn't feel able to face the oncology ward. Anyway, on Tuesday she was asked if she could pop up to Camperdown to look after a baby for half an hour. It wasn't till she was half way there that she remembered what Camperdown was. But, instead of turning around and asking someone else to go, she decided to come and make it a special time for herself and take that first step into the oncology ward.
Adam phoned to tell me this before I arrived, so I came to the room not quite knowing what to expect. When I arrived I found Lucy and this lady having a lovely time - Lucy being her usual cheeky cheerful self, laughing and playing, and unknowingly helping the volunteer to take some more steps down the path of grieving and growth. And how kind of God to give her Lucy - a baby who loves everyone she sees, who looks and is healthy and happy, and who even still has most of her hair - possibly the easiest introduction to the oncology ward there.
Wednesday, October 20, 2010
We can almost say 5 down, 1 to go!
Monday, October 18, 2010
It feels oddly like we've come a full circle, as Lucy was moved yesterday into the room we had when she was first diagnosed and where we had our longest stay in the hospital. It's a room sponsored by the police - complete with lights - and a mural on the wall. A large "PLEASE DO NOT USE BATHROOM" sign is a little disconcerting, but otherwise it feels a bit like coming home.....well only a really little bit - maybe 'home' is the wrong word - more like coming back somewhere familiar. I am glad to say that as I sit in the chair I typed so many of those early posts, I don't have the same sense of fear or anxiety as I did then, which is a great testimony to God's grace and kindness both to Lucy and to me.
She is continuing to tolerate the chemo well, although noticeably tired and just not as sparky as usual. Not grumpy, but not full of beans like she normally is. For some reason I have a feeling she might lose more of her hair this time, but that is not based on anything at all other than a gut feeling, and of course that may just be indigestion. Wait and see.
We had a really good day at the hospital on Saturday with all the girls. They loved playing in the playground, and especially liked the Starlight Room. I even met a volunteer who works with my old boss at the Anglican Diocesan head office! Emma has rekindled a great interest in beado's or hummer beads (the things you make patterns with then iron to melt them all together). A professional musician came to the Starlight Room in the afternoon to do music with the kids which Jasmine particularly enjoyed, and Madeline just thought jumping on the bean bags and watching a movie projected on the wall was amazing. We even got to have the night at home together thanks to my wonderful mum, which was just lovely.
Madeline had pre-school orientation today, and, as expected, was quite difficult to extract at the end of the time there. She is terribly keen to go, and was very excited to have 'a little visit' today. Lucy's extra grandparents the McKerlies came to play at the hospital so I could go with Maddie to pre-school, and I think everyone had a lovely time! Adam is away for a few nights this week so please pray for us and the girls with all the juggling, and for the Burkes as they have the girls for the nights Adam is away and I'm at the hospital. They seem to cope very well with it all, but Emma is a bit unwell and also the most affected by all the disruption. We're hopeful to be out of hospital on Thursday or Friday, assuming Lucy is still well.
Thanks for keeping up with us on this journey, love to you all.
Thursday, October 14, 2010
This morning's blood test showed Lucy's neutrophils have popped up to a level that means she can have her next course of treatment. We are ever so grateful to have scored a fantastic single room in the ward, especially as we will be here for at least a week. This round is 7 days, whereas previous rounds have only been 4 days. Hopefully we will be able to go home again when the chemo finishes.
Please pray for us all as we do the family juggle for the time we are in hospital, and for Lucy as she faces chemo again. She's tolerated it all so well so far, but with each new round there is the possibility she will not do so well. This time she also has a different drug that she's not had before. Although it's usually tolerated quite well by the kids, it's another variable and unknown for us. So far so good - she's sleeping soundly beside me.
I just watched an amazing game of netball to round out the Commonwealth Games. Such a shame to ultimately see the Aussies go down in double extra time! A fantastic game nonetheless. That jolly NZ GA just would not miss a goal!! I used to be a netball player - I don't think my back would let me play again (for the moment at least!) - and I'm am just always astounded by how big and athletic the players are. But I did also feel that familiar irritation with the umpires getting a bit whistle happy and not letting the game flow. Mmm, maybe better I'm not playing and just watching....
Wednesday, October 13, 2010
Still no beds today (still trying to hold onto the good things..... but my grasp is getting a bit weaker). Adam's in Dubbo and we are just managing to keep going. At the Burkes today while we waited on news for a bed, and will stay here the night so I don't have to be on my own again for the evening. Here is Lucy being darn cute 'singing' her favourite songs....
Monday, October 11, 2010
Friday, October 8, 2010
We were then advised that there was a bed available for Lucy, but on having her blood tested at the hospital found that her neutrophils (type of white cell) have still not recovered enough to start the next round of chemo. I really didn't feel like going to the hospital today, but after getting it together to sort out the other girls and get there, the news that we weren't to start treatment today was a real let down.
The doctor advised that he thought an earlier higher count of Lucy's neutrophils may have been an error (esp considering that all other bloods were on the way down). This far through treatment, it's likely that her bone marrow is 'tired' after being blasted so many times, and just taking a bit longer to recover. Hopefully it will be recovered enough to blast again (!) next week.
Have just been feeling low, tired and head achey this afternoon and evening, lacking in energy for anything much at all. The last 2 days I've also been thinking about the future again, and feeling a bit anxious about the prospect of Lucy's leukaemia coming back or relapsing. I haven't been feeling anxious about the future for some time, but for some reason it's been on my mind a bit. Clearly still learning to take each day at a time, and trust God with all our days.
Hopefully a good sleep will help and tomorrow will be brighter.
Monday, October 4, 2010
Saturday was a nice day and we took the girls horseriding in Megalong Valley and had a picnic a park at Blackheath. So much beautiful blossom everywhere, including in the front yard of the Russell's house where we are staying!
Presuming Lucy's bloods have recovered sufficiently and there is a bed available she will start her next cycle of chemo on Friday. It is starting to feel a little bit like the home stretch now - this is round 5 of 6. Not that we know what happens when the chemo finishes really, but my vague understanding is that she will have regular checkups for a long time (hopefully getting further apart), and her central line will come out a few months after she finishes treatment.
For the first time I'm actually turning my mind to next year and contemplating what it will look like. Jasmine will start school, and Madeline will be starting at pre-school. Hopefully hospital appointments will be kept to a minimum and there will be no reappearance of any leaukaemia! Things at Early Intervention will be a bit different with Lucy graduating to a weekly group rather than fortnightly one on one appointments. Hopefully she will progress to crawling and ultimately walking although this may not happen till she's well over 2 years. We're also looking forward to seeing some teeth!
So it's all looking a bit different and hopefully a bit more back to 'normal'. But lets not get ahead of ourselves.... a few more things to get through this year first.
Hope you had a great long weekend too!
Tuesday, September 28, 2010
Anyway, Adam is a lot better and returned to work today. But now I'm a bit sick. Madeline is pretty awful too - all snotty and sad. But since Lucy has stopped breastfeeding I'm loving the cold and flu medication that I'm now free to take after approximately 7 years of not being able to take them!
Emma and Lucy have so far resisted getting sick at all, although Lucy's white blood cell count was down today which may indicate that she's fighting the virus - hopefully she will win and she wont get sick - especially as we're hoping to have a few days up at the Blue Mountains over the long weekend before her next chemo cycle starts Friday week (hopefully).
I'm feeling a bit defeated on the home front - and too tired to really do anything about it. It's not too crazy, just random and frustrating piles of washing that are not putting themselves away, piles of paper that seem to materialise out of the air, and the relentlessness of having to feed small people and clean up after them! We still have a few meals in the freezer and quite often people very kindly drop in a meal, for which we are very very grateful and which makes the feeding of the small people much less stressful. I'd love to do some sewing (for some reason it's become my sanity) but the last little while it's just not been possible. Maybe tomorrow.... It's Madeline's birthday on the weekend and I'd love to make her a little dress, but I'm not sure I'll get there. Oh well. Maybe I'll just aim for Christmas....
Emma is enjoying Spring Fest at Mowbray School - a holiday kid's programme put on by Lane Cove & Mowbray Anglican churches. Such a great opportunity. She's loving the games and craft, and especially getting to know and hang out with some big girl leaders. Next week she's also going to go to a special Sibling Day at the hospital which she's looking forward to.
Hope you're enjoying your holidays and not succumbing to any of the nasty bugs doing the rounds at the moment!
Friday, September 24, 2010
Lucy is as sparky as ever. We enjoyed being able to go to Early Ed on Thursday, and we are encouraging Lucy with crawling and side sitting. It looks like she's favouring her left hand, and objecting being forced to do things with her right hand. We're also trying to interest her more in books - hospital time is good for this! - at the moment she seems to see books more as toys to throw around or put in her mouth! I find it hard in our days at home with the girls to make time to play and read to her, so please pray I'd try hard to make time for this important 'work' which is so important for her development. We need to get the other girls onto the task of reading to her a bit more. She's loving knocking over block towers to the cries of 'crash' from her sisters (or Mum!) which is very cute.
Happy holidays to all of you with school age children - I hope that you make some time to just 'be' and enjoy beautiful spring together.
Wednesday, September 22, 2010
First, Lucy's bloods are already starting to recover after the last round of chemo, which is great and means that she didn't have to have any blood transfusions. But, a thyroid function test last week has shown that her thyroid is mildly underactive - a common problem for people with Down Syndrome, but which is readily manageable with medication. So she started on another medicine today for that and we add an endocronologist to her list of specialists!
Jasmine was stung by a bee in the garden at Nanna and Poppa's place, and Madeline had a tick (I think...). Adam has some wierd gungy finger that is looking a bit infected and has gone to the doctor tonight. Emma is ok but was complaining of a sore eye on the way to bed. I'm pretty good relatively speaking!
I'm sure you're all very glad to know these details, but it struck me as kind of odd to all happen at once. We've also been notified that there was a child at creche at church on Sunday and Tuesday with whooping cough. Fabulous. Hopefully Madeline did not get in the way of any coughing or sneezing. Jasmine has a bit of a cold, so hopefully that will not develop into anything even minutely resembling whooping cough!! Please pray that all the children, but especially Lucy, would be kept safe from this possibility!
We are hoping for another fever free recovery period for Lucy so that we can be home over the holidays, and not have so many clinic visits. Adam may be able to take a few days off next week which would be great!
Hope you are well and free of random health issues!
Saturday, September 18, 2010
What a beautiful day it was today! Sunny Sydney at it's spring best. The first free Saturday in a while and we were drawn to the outdoors, spending lots of the day at Narrabeen - on the lake side with a few ducks - known as 'Duck Park' to our girls. Just gorgeous!
Lucy is well, although her temperature crept up to 37.3 this evening - we're hoping that it comes right on back down again as a trip to emergency for re-admission is not what we want. I missed a dose of her antibiotics today as we were out all day and I forgot to take the bottle with us (the first medicine dose I've missed!!) so am feeling a bit anxious about that. I spoke to a nurse on the ward who said not to worry about it, and not to worry about making it up. It's the last day on her course of antibiotics, so hopefully she will be fine...
The girls are currently obsessed with The Sound of Music. Madeline is particularly taken with it, asking to watch "Doe a deer" pretty much every day. We are constantly regaled with renditions of You are 16 going on 17, Doe a deer and Favourite Things and discussion about who is whose favourite of the Von Trap children. Lucy is babbling a lot - lots of 'da, da, da' and 'na, na, na' (I'm working on 'mama'). We're wondering whether her first intelligible words might end up being "Doe a deer"! It would not be surprising given the exposure she's had!
Wednesday, September 15, 2010
Feeling overwhelmed by kindness at the moment - today we had lovely people mow the crazy lawn for us and weed our front garden! Also, a few weeks ago we were told of a proposed increase to our rent (no, not so kind...). I wrote to ask for a slightly smaller increase due to our circumstances, and today we were advised that the landlord has refused our request (also not so kind.). But, someone at the Real Estate Agent (we can only guess that it's the owner, but maybe not) who heard of the property manager's turmoil at having to break the news to us has incredibly kindly offered to cover the different between what we offered to pay and what the landlord is demanding for 6 months!!! That is really quite stunning, especially as the proposed increase is actually greater than what we were originally advised!!
I often stress about the house thing, and the thought of having to move right now sends me into a spin. We can't afford to buy a house anywhere around here, but we cannot contemplate moving away - now more than ever. We are so thankful for this kindness shown by someone who we have never even met. Jaw droppingly stunning as I said before! Still can't quite believe it.
Must go to bed after a long day, visiting the clinic tomorrow with Jasmine and Madeline in tow. They love going to 'hospital care' which is child care at the hospital for siblings, run by gorgeous volunteers, and it's nice to involve them in the process and to stay kind of together for the day.
Monday, September 13, 2010
Lucy is doing a lot better - her fevers have subsided and the sore foot, though still a little swollen, is much improved. This is all great news, but yet I find myself being forced once again to confront the reality of where we are, and it's not nice.
I found out last night that two children whose parents I have met whilst being in hospital have died recently. Whilst we don't hold fears for Lucy's life at present - she is doing as well as can be hoped or expected, and the doctors are aiming for complete recovery, it is an awful reminder of the reality of life and death here in the oncology ward and the precariousness of life.
I feel so sad for those families, and have spent a lot of time today just wondering what you do if your child dies. What do you do when you go home? What do you do after the funeral? Really, what do you do?
I may never see those parents again, but I so pray that they would know God's kindness even in their grief, that they would know of the hope that he freely offers to us all, of his grace and mercy demonstrated in the cross of Jesus and the victory over death he has won in Jesus' resurrection.
I feel such a burden for all the families in here, and yet so inadequate and at a loss to know how to care for them. But I can pray, and I can talk, and as God gives me opportunity and energy hopefully I can share our hope and faith with others. Please pray with me for all the families here - for healing, for hope and for peace with God. And pray for the wonderful chaplains here at the hospital - they have a couple dedicated to the oncology ward, funded through Anglicare. Such a wonderful and essential ministry, yet very stressful and hard for those involved, so please pray God would sustain them in their work and faith.
Friday, September 10, 2010
Well it's been a bit of a wobbly beginning.
We got in last night and at about 9pm Lucy woke up quite distressed. She then spent most of the night (on and off) trying to fill her nappy and was obviously quite uncomfortable, and then when she woke in the morning and finally succeeded, she went on to develop a fever of 39. She's been quite sad and very sleepy, not wanting to eat or drink at all really.
She has been started on some antibiotics and given panadol which has brought her temperature down. She also has a strangely swollen right foot! It may have been caused by some mosquito bites that have been aggravated with the chemo, but we're hoping that the antibiotics will take care of whatever it is.
She perked up a bit after the panadol and a tiny bit of food, but is back asleep again now. Hopefully this will be shortlived, and as her neutrophils are currently 5.0 (!) she is not so vulnerable to infections. Of course this round of chemo will change that, but hopefully for the moment her immune system will help us out too. Emma was sick with a bit of a fever yesterday (as was half her class apparently) so maybe she's just got whatever Emma had.
I was starting to feel a bit wobbly myself with Lucy so sad and in obvious pain. I don't think I've felt like that since Lucy got her first fever after the very first round of chemo. A big reminder that we just don't know how each round of chemo will affect her, and of how little and vulnerable she is. I'm very grateful to have had a visit this morning from the wonderful Alison K. I feel so much calmer when there is someone else with me through the bumpy bits. And thanks too to Mum who came with us yesterday when we were admitted. My back thanks you for all the carrying you did for us!
Please pray we'd keep trusting God with Lucy and our whole family every step of the way. And thanks that his mercies are new every morning.
Thursday, September 9, 2010
Monday, September 6, 2010
We had a lovely weekend though - we even got to walk to water on Saturday! Didn't get too soggy, and it was a good time together. Even Jasmine walked the whole way (about 5kms) without complaint. This was no doubt mostly due to the fact she was holding Renee S's hand the whole way - thanks Renee!! Our girls just love you!!! Needless to say, they were exhausted come Saturday night. Adam and I had a great night out on Saturday together at a yummy Malaysian restaurant in Lane Cove. After church on Sunday we had a lazy afternoon with a viewing of the current favourite movie The Sound of Music and a whole lot of washing in prep for the week and to take advantage of the gale that was blowing across Sydney.
Will update when we get to the hospital!
Friday, September 3, 2010
The biggest change in our house in the last few days has been the disposal of Madeline's dummies. Since she was tiny Madeline has loved her dummies - not just one, but multiple dummies when in bed to be sucked, held between fingers and held touching her nose. Over the last little while she's been waking us up semi-regularly when she can't find one in the night. Sorry, not can't find one, can't find ALL of them!! Very frustrating. She's also been doing a whole lot of pushing and hitting (mostly of Jasmine) and speaking rudely. The only threat that has worked has been loss of dummies.
As of Tuesday she had 2 left after having to throw several in the bin due to infractions. After several nights waking us, I promised that if she did it again those 2 would go in the bin. Sadly (for Madeline) she woke us again, and as promised she had to throw the dummies in the bin. Last night was our first sans dummies, and it was a dream! After a few initial tears, she went off to sleep and we weren't woken up at all! Success! Today at rest time she still wanted them, but calmed down much more easily and quickly.
My back is still quite sore, so your prayers would be appreciated as we head into another week at the hospital next week. I'm also trying to get back into reading the Bible and praying at night which is going ok - I've done it a few times now, back reading 2 Corinthians which I dropped a while back.
Adam is also tired, so please pray for him and all of us. We're half way through Lucy's treatment which some days feels like a good thing and that we've come a long way, and others feels like we're not at the beginning and nowhere near the end.
We are planning to do the Walk to Water with our church tomorrow where we will walk from Cammeray to Balmoral - hopefully it wont be pouring with rain! Walk to Water is an international event put on in partnership with Open Doors to raise funds for Christian communities around the world. Last year about 150 people from Cammeray and Naremburn walked to raise around $3000 to put wells in Christian communities in Nigeria. This year Open Doors are hoping to assist a community in Ethiopia by providing water pumps for crops, generators to produce electricity for 250 households and classrooms for a school at Maychew. We would really like to walk so pray the rain holds off!!
And most exciting is the prospect of a night out with Adam thanks to a kind offer of babysitting! Not sure where yet, at this stage anywhere will be good!
Hope you have a good weekend too, love Liz
Monday, August 30, 2010
Lucy also had fun at the birthday celebrations, and enjoyed squishing cake in her little hands. We are hoping to only have to go to the hospital once this week for a check up. She's been waking up a bit at night lately which is very unlike her - she seems to still be uncomfortable when she passes wind or opens her bowels which is happening a lot thru the night. Poor bloss, not very nice. But otherwise she's great! The next round of chemo starts next Monday, and in a funny way having been at home for most of this cycle has made it feel very long!
Today we visited my Grandma - Lucy and the girls' great grandma. Her name is Elma, but all the great grandchildren have gone through phases of calling her Elmo, which was Madeline today! Poor Grandma is struggling with deteriorating eyesight and her hearing has always been poor. But she loved seeing Lucy and Madeline, especially enjoying Lucy's smiles and clapping which she turned on beautifully. Lucy has inherited Grandma's blue blue eyes, and they always remind me of her. It was amazing to see Lucy's pudgy little baby hands held Grandma's 96 year old hands. Grandma always says things like "it's good for me that you come and visit, not so good for you". Although it's hard to see this lady that I have known and loved all my life growing older and more frail, to see her is also a testimony to God's grace, and I love that our children have been able to meet her. It is indeed good for me (and them) to see her. And it's a wonderful privilege to know that a short visit from us makes such a huge impact on her life and I wish I could do it more.
Wednesday, August 25, 2010
Here are a few pics of Lucy from today - I feel like every time I look at her she's getting bigger - no worries yet with her losing weight!
Sunday, August 22, 2010
The doctor even suggested on Friday that perhaps her blood levels wont completely bottom out this round at all, considering that as of then her neutrofils were still relatively high, haemoglobin stable and just platelets low. She had a transfusion on Friday and may need another one this week, but otherwise all is excellent. We are hoping for another hospital free week - well free from being an inpatient - just visiting the clinic as required to keep an eye on how things are progressing. Pray those fevers stay away!
My back is still sore, but having seen the chiropractor a few times it is starting to settle down. I'm trying to remember to flex/tense all the right muscles and to bend and move the right way. I must say that having a sore back makes me feel quite vulnerable and wobbly - both physically and emotionally. Have shed a few more tears this week than in the last little while, and had a good ol' cry meeting a new little bubba this morning. Not because I didn't want to meet him (and by the way he is gorgeous Neil and Kirrily!) but I suppose it just makes me think about childbirth and all that and brings back all those thoughts and feelings associated with Lucy's birth. Add in some back pain, a talk at church about suffering, God's care and deliverance in our suffering (as opposed to deliverance from suffering) and for me tears were just inevitable! Oh well....
This afternoon we enjoyed a relaxed birthday lunch for Adam's sister at the Burkes and now all the little ones are tucked up safe in bed. I've been trying to rustle up some energy to finish off a few little dresses I've been sewing for Jasmine and Madeline, but just can't do it. Think I shall go to bed instead. I've got 4 more days till Jasmine's birthday on Thursday when I really must have hers done! Hope you had a great weekend.
Wednesday, August 18, 2010
Lucy and I have been going to the oncology clinic for checkups and she is doing very well. No fevers in sight, and her counts are just starting to go down. It's likely she will need a platelet transfusion on Friday but otherwise everything is still pretty high. Today she has delightfully pink cheeks and nose which always draw many comments at the hospital. Once they know it's not because she's sick, it's all gooing over how cute she is! She certainly is a social little creature, protesting loudly when I don't position her pram where she can 'talk' to people like Donna on the desk at the clinic, or when everyone else at home has finished their meal and she gets left behind in her highchair in the dining room. She's also perfecting her throwing arm, and most toys are given the chuck from the highchair or pram.
My biggest struggle at the moment is with my back, which is still pretty sore. Am being held together by my trusty belt which I wear all the time (even to bed!). It's difficult to sit for any length of time and driving is quite uncomfortable. Lifting Lucy in and out of bed/the car/off the floor is pretty tricky so am trying to keep it all to a minimum. Hopefully it will get more stable soon, and I'll simply have to get back into strength exercises.
Hope you are enjoying the lovely sunny patches!
Friday, August 13, 2010
We've made it home again having finished the 3rd round of chemo this morning. Lucy has again coped well with the treatment, a little off her food, but otherwise quite good. She was excited to come home and see her sisters today, and they were equally pleased to see her.
It's been a long week sharing the room at the hospital. The other baby in our room was quite unsettled especially at night, so that was a bit of a struggle - I think I mentioned that the other day. They got to go home on Thursday which was a surprise, but our new room mate after they left was a lovely 12 year old girl. Anyway, we're home now and it's good to be here!
Some of you know that since having all these lovely babies my back and pelvis has been quite sore for some time. I'd been seeing a chiropractor for a while before Lucy was diagnosed and had been making some great progress. Since Lucy has been sick though I haven't been able to go. I had been pleasantly surprised with how good my back was feeling considering all the sleeping on fold out beds, stress, lifting etc, but just this week my lower back has started to protest and is quite sore. Must try and make it back to see the chiro, as well as do some pilates and try to get strong again.....
I've been feeling a bit crazy this week - no doubt hormonally related but nonetheless unpleasant! It's felt a bit like we're a long way into this journey, but a long way from the end - just plodding through the middle. But each day and week and month is another closer to what we hope will be a full recovery.
I spoke with the consultant at the hospital today who was helpful in answering some of my questions. He was keen to remind me that Lucy's leukaemia and myelodysplasia were both caught very early and were very mild. The treatment she is receiving should fix both problems, and she is doing as well as could possibly be expected. All good things - great things to be very thankful for. Plus she's gorgeous and winning hearts everywhere! And tonight we're all home together.
Thursday, August 12, 2010
Lucy and and our minister Rick Smith
Wednesday, August 11, 2010
The room is very small and I've been feeling a bit all over the place, so it makes it a bit hard to hide! In God's kindness though somehow I have been able to have the energy to chat a bit and be alright around the other family. I nearly cried when I was shown to the room, wondering how I'd cope, but it's going ok. A new book I ordered a while ago arrived today so I've enjoyed having a look at that!
Thankfully Lucy has continued to be pretty happy and cope with most procedures well. She isn't bothered by the nurses or the doctors coming to do things, and we hope this continues!
We had some great news the other day - a while ago we all had tissue typing blood tests done to see if anyone is a potential donor for Lucy in the event that she needs a bone marrow transplant down the track. We found out recently that our little Madeline is a 100% match! Adam is also a 5/6 match which is pretty good. We hope that Lucy will never need a transplant, but in the event she does it is wonderful to know we have an exact match from a sibling which is the best case scenario!
Monday, August 9, 2010
Today we are back at the hospital for the next round of chemo. Lucy's blood test this morning showed a big jump in all her counts (except haemoglobin which was just a little bit up), so she was pronounced fit for more chemo. She had a small procedure this morning under general anaesthetic, where some chemo was injected into her spinal fluid via a lumbar puncture. She was a bit disoriented and distressed on coming out of the anaesthetic which may mean she came out of it a bit fast, which was a bit sad. She didn't seem to even recognise me for a while but when she calmed down and had some breakfast she came back to her old self again. We're now waiting to go up to the ward, and Lucy is having a snooze in the pram. Hopefully we wont have to spend the whole day here. I find it a bit overwhelming in the oncology clinic sometimes. Also hoping for a single room this time...
Anyway, thanks again for yesterday, and for your continued love and support and interest even if you weren't able to come. We appreciate you all very much.