Day Two at Home - Woo hoo

Hi all

Well was missing the blog updates so thought I would post how the girl and the rest of us are doing at home.

In Imogen's first night home there were a few night calls, just because she was not use to her surroundings. Yesterday Jason had the day off, to allow him to spend it with his beautiful girl.They walked Kody to school, and then took Molly to the park. When they got back home, we played some board games. Then out she went to ride around like a crazy nut on her little bike. It was like watching a puppy who has been locked away all day, and then when let out they what to look, try and discover everything all at once. Surprisingly after laying in the sun on the tramp, Immie fell asleep, and slept for three hours. Immie woke around school time, so after a quick sandpit play, it was a walk to pick Kods up and then on immie assistance a swing at the park. Home to rest just after 4pm, asleep by 5pm for the night. I went to watch "The Women" with Livi, Mum and my cousin Sharon, and Jason watched Immie and Kods.

Today we spent the morning getting ready to go to Kai's party (Immies friend from the hospital), a Halloween parity as he is born on Halloween. We had to try fit a ng feed of 200mls in before we went and Im's tummy is still not too happy. We arrived late, and Immie (and even me...) was very overwhelmed to discover it was not just Kai there, but heaps of people. We had explained to Imogen that it was a party with lots of people, though I am not sure she understood. She spent a lot of time cuddled on my knee, and sometimes ventured off to the cubby house. Then the food came out, she took a chip, tasted it and she then proceeded to chuck. After that she settled down, and had a little more play, then she came to me and told me she was ready to go as she was tired. After acquiring another few slabs of pediasure and bags for the ng tube, from Cherrie, we were then off.

I managed to put on a 200ml feed on the way home with no problems (I was very chuffed, as its been so hard trying to get Imogen's feeds to stay down). On the way home Immie did not stop yakking on, it was so refreshing as she has been very quiet this week.

After picking Kods up she quizzed him about every action on the DVD they were watching, I loved to listen to it. Then Jas arrived home and she ran outside to catch a ride down the drive way with her daddy. After Imogen cut a few flowers, it was time for baths and then falling asleep on the lounge.

Watching her at Kai's Party, today, was fun though tinged with sadness, as I watched the other beautiful girls and boys running around, with lovely long hair and not a care in the world. Just sometimes I question how could and why she has gone through all this pain in such a short life. Often when I go to sleep I dream of my beautiful 2 year old girl who had not a care in he life, besides which toy was her favourite for that day, and that cancer never existed in ours or any ones life's.

Love Fiona

P.S. We love being home and together....xxxx

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And the day continues....We are home!!!

As I was saying before (see below)...we are home again woo hoo!!!!, we just got home again as after her dinner feed Immie chucked her tube up out her mouth - blah!!!!. Luckily when we arrived at the hospital we got the tube inserter master aka Dave, so it was down in 2 mins with no messing around. We got home at about 8.30pm, to a beautiful meal of Salmon and cous cous salad made by lovely Livi.

Anyway the radiation lady, Mandy, is going to organise for us to go to initial met up with the radiation team, and get Immie use to the whole idea, as they want to do it will no sedation or general anesthetic. The whole process takes about 5 mins and does not cause any pain. Imogen will have to do 14 sessions of radiation. Every day for approx 3 weeks, weekends off.

After that Maryanne our oncologist came to see us, Immie gave her a smile and she sorted the potassium levels out, now a tablet and non aversive version. Then said we could go home!!!. It was only when I began removing , the pictures did Immie barriers start to break down, and started talking to Carla about the people in the pictures and were we where when taken. The more pictures and decoration down the better Immie improve, soon she was off the bed getting dressed and putting her shoes on.

My incredible mum, did three trips to the car with all our stuff, and Immie and me went to get her balloon from Penny re pumped and wait for meds ( a nightmare that anyone has spent time in PMH knows). After putting in the script at 10am, the meds were ready after we picked them up at pharmacy at 2pm. Oh then my mum drove us home bliss home.

Now this is where we sit, my beautiful hubbie and me, eating chocolate, drinking wine, and chatting, giggling about today's happenings and no whirling machines....oh I love being home,

Love to all

Fiona and the Gang xx

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We ARE HOME!!!

WOW, WE ARE HOME!!!!!!, yeap you heard it here first, after a rough night at the resort, Immie had major stomach cramps from the potassium mixed into her milk and then chuck up (and then I managed to pour the spew on her and then down the back of the recliner - talented I tell you). Immie then would not let me go. The morning Immie awoke still grumpy, but now actually wanted to go home (yippee). She was very moody all morning, though cheered up in peaks like when she saw Carla the toy lady. Im then had to have her broviac dressing change (yuck) lots of screaming and tears. Then I had a quick meeting with the radiation lady, who is going to organise someone to call us tommorrow to organise....oh crap immie just chucked her ng tube out of her mouth...of to the hospital we go again xx will finish this later if I get a chance xx Fee

Day Twenty Two

Hi fellow people,

Last night’s sleep was a little messed up, mainly because the NG tubes feeds were a bit over the top. At 2.30am after two boluses – one for lunch (80) and one for dinner (120) then night feeds of 55 mls per hour, Immie poor lil tummy exploded and she projectile vomited across the bed – nice!!. The fab night staff were very quick to clean up her bed and Immie got back to sleep ASAP. Immie woke at 5.30am complaining about how loud the pumps were (what the?), we only had one pump going which would a first in 10 days. She then went back to sleep but soon awoke to pee, and remain awake after 6.

We did a little cutting and a bit of watching tele, though Immie soon tired of all of that. She rested until Carla (the toy lady lol) arrived to play; they did a lovely box for Aunty Livi and some more colouring in. I made a skeleton with arms and legs that could be moved (how clever I am) for Halloween. We then got Immie up to look (and scowl) at the musical mat, then Carla and me took Immie for a walk to see Nurse Shell and Nurse International Dora (aka Shirley) wearing their hats that were in the shape of a lion and a tiger. After a few giggles we returned to the room, with us pretty much dragging Immie part of the way (naughty mummy and Carla).

Just after that Aunty Livi arrived to a grumpy response, and there was no way any of the docs or oncologist were getting a happy greeting (lol). I felt bad for Nurse Sarah, as we have had her for quite a few days since being here, and she has been so lovely with Immie trying to chat to her, but Immie won’t have a bar of it. She even told her the other day she did not like her (Sarah’s) head band, and Sarah removed it!!.

Immie was in a really funny mood today, when told she would be going home possible tomorrow (yeap you read it right), Imogen told us she did not want to go. I can’t imagine, how she feels and what she thinks in that little head, after coming in here feeling 100%, she is going back into the world with her self esteem and spirit a little broken (oh it makes me sad to what we have to do and what they have to go through to beat this bloody beast).

After lunch mum came in and Immie rested for a while, then proceeded to have another huge chuck....BLAH!!!, usually she feels a little better though this time after she was more grumpy. Livi was meant to stay here with her tonight as I was going to my English class, no way was Immie going to let me leave, so no English class tonight. I sit here watching my beauty sleep, and hope it brings her peace and more restfulness.

Love Fiona

http://picasaweb.google.com.au/theholmesgang/DayTwentyTwo#

P.S. Got to see our two pals today, Beautiful Nicole and Cath, who came in for a check up after ending up with pneumonia in Bali, argh, they went to the private hospital over there, and were treated fabulous. They had a wonderful time there, with the best service. It was such a well deserved break for them all. The one thing we have been blessed with while going through this journey is the friends of other families with kids with cancer we have met and formed incredible bonds, that is one thing we will be eternally grateful for.

P.P.S OMG I CAN”T WAIT TO GO HOME!!!!!!!, this will be our last stay ever in the PMH Resort, its killing me to stay another night, hate to whinge though as others in here have been here much, much longer, Hugs and Kisses to Mikie and Ollie

Counts –
Red cells – 82
Platelets – 46
Neurophilis – 4.37

Day Twenty One - WOW!!!

Hi

Last night’s sleep was great, Imogen awoke at 1.30am and then again at 5 am for a pee, then I slept next to her, while she patted my hair, gave me kisses and told me she loved me. No temps, no chuck ups and the feeds were put up to 42 mls an hour (a huge record).
Immie woke again the morning at 7am, a little rough then went back to sleep till about 8.30am. Then she woke up, chucked up and watched ABC kids and her favourite playschool. Carla the play therapist arrived and they began to painted bats for Halloween and a few pumpkins, Immie really enjoyed this. Just after 10am, the docs and Dr Maryanne arrived to check her out, to Imogen’s disgust (she pretty much ignored them), and she continued to colour.

After that Josh and his mum Hannah (who were here at PMH resort for treatment) arrived with a gift (always well received by our beautiful girl), of a Finding Nemo bubble blower, the two had alot of fun catching the bubbles, and Josh was very loving with a few cuddles for Immie. In amongst all this we had nurses etc. In and out with line changes and meds to change. Immie began an n.g. feed bolus (90mls over an hour), a huge defeat for someone who was only handling 10mls just a few days prior.

Just before lunch Aunty Livi arrived, with more petrol for Mummy (real coffee yummy) and then sat with Immie while I went in search of a green lollipop, two bags of starburst lollipops later and no green lollipop (even though there is one shown on the front and back of the pack – argh!!). The first food (kind of) thing Im has shown any interest in for the last fortnight. After lunch Immie went to sleep and also received another platelet transfusion, FUN!!!, which when awaking up was check for temp and had a temperature of 38.2 OMG!!!!. I think I may have jinxed it by chatting to Cherrie and saying we could come to Kai’s party on Friday. Then the temp was taken a little while later and to have found to go down YIPPEEE!!!, so it was suggested that it could have been a reaction to the platelets.

Immie has been very quite the afternoon; I think she is still exhausted from the morning’s big play. She also chucked the afternoon as I had to do mouth care (6 times daily) with her which involves getting a large cotton swab dipping it in foul mouthwash and then swabbing the back and sides of her tongue, and then covering it all with dental gel on a smaller swab which she managed to get the end off and started gagging on....BLAH!!!. Hopefully over the next few days the morphine will be gone, the antibiotics have now been turned off as she never grew anything nasty from her blood cultures and the TPN feeds (iv feeds) are finished with the ng tube feeds replacing them. We just need to wait and see how the girl goes over the next 24 hours with no antibiotic protection...and cross everything no temps arise!!!.

Love Fiona

P.S the incredible neurophilis have jumped again to a crazy 3.97...not sure what yesterday was about!!!!

http://picasaweb.google.com.au/theholmesgang/DayTwentyOneWOW#

Counts –
Red cells – 84
Platelets – 11 (transfusion)
Neurophilis – 3.97

Day Twenty

Hi there

Well I had lovely sleep, awaking to beautiful sunshine shining in my back door, and all the way to my bedroom. On the other side of the planet in the mysterious land of 3b, Jason had gone to bed late after doing his tax for the month (BAS), and got woken up for a few wee stops. Then she woke again early, and then after a bike ride, at about 9.30am she was very tired so back to sleep. This is where she stayed for quite some time until waking about 2.30 to scowl and grump at visitors Nigel and Jody. At about 3.30 I arrived back from a fabulous day with Mum and Livi at the craft fairs, YAY!!!. I purchased the Immie a special goanna on a piece of wire...hey looks better than it sounds (see pics) and some more goodies for Christmas presents.

Last night Immie’s temp peaked at 38.2 which means the antibiotics remain for a bit longer, after having no temp for two days it was a little bit of a surprise. The afternoon her temp has been 37.9, and today unfortunately her neurophilis have drop to a crazy 1.01 (yesterday 3.2) which could signal an infection on the way. It’s just a matter of wait and see, as the temp is not high enough to signal for blood cultures to be taken, it has to reach 38.5. Also the afternoon she chucked up, which is also something she has not done in the last few days – blah!!!.

Immie is going to sleep tonight with a heap of pictures of two of the nurses cats that they printed for Immie, because we told them how much Immie wants a kitten (thanks Nurse Romina and Nurse Rochelle, the nurses here on the ward are amazing it’s just the small things they remember)

Send us some good healing vibes, and that this just a minor glitch in the program,

Love to all
Fiona and the gang

Counts –
Red cells – 81
Platelets – 33
Neurophilis – 1.01

Quote for the day

“If you raise your children to feel that they can accomplish any goal or task they decide upon, you will have succeeded as a parent and you will have given your children the greatest of all blessings.”

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Day Nineteen

Hi all

Jason and Im, had a good night’s sleep, just wee stops throughout the night. Immie woke the morning at 7am, very tired, she fell asleep soon after on Jason’s lap. She then was put back to bed, and sleep to about 10.45am, when Granpa, Granma and Aunty Livi arrived, she then was thrilled to see Granpa and they had an animated talk about the movie Monsterhouse. After dropping Kody of to his pops, I arrived to my beautiful girl smiling.

Then a bit more playing, then the duo left when Keeley, Immies favourite day care carer arrived, they had fun crafting (with all the specials Keeley brought – thanks Keeley) and then Keeley got a run down on what was happening on the Tom and Jerry movie she was watching on her baby TV. At about three Keeley left and Immie receive a platelet transfusion; she finally fell asleep in Daddy’s arms after watching Fishing Australia (and talking about how she and Granpa are going to go fishing soon!!!). Jas and I went to have dinner in the family room, and I decided maybe another night of sleep at home would be great, so home I have returned.

Medically, one more antibiotic was turned off, morphine was turned down slightly and her TPN (Iv feeds) were turned down and her ng tube feeds were put up to a huge 20ml an hour. Imogen’s neurophilis had a great jump today again to 3.1 – woo hoo, her platelets were average at 10 so she received a transfusion. All the docs and oncologist are very happy with Immie and her amazing jump from feeling so crappy only days ago.

YAY YAY YAY, thanks all for the support xx

Love Fee

http://picasaweb.google.com.au/theholmesgang/DayNineteen#

Quote for today –
“While we try to teach our children all about life, our children teach us what life is all about.”

Day Eighteen

Hi there

The morning was a normal wake up morning for Immie, a little grumpy, as her sleep had been interrupted several times by wees, bright lights when doors are opened (constantly) and a bad dream at 4 am about Daddy and Kody, she was very sad. Though no temps and no throwing up, Hurray!!!. She awoke also with a tummy ache and had a bolus of morphine, then slept for ages the little beautiful babe.

Woke up again feeling a bit yuck, but then we had a few window visitors (as they only looked through the door) and more specials from a lovely lil girl Mia and her mum Trina, who had arrived for leukaemia clinic. Then Im perked up, and did playing with Aunty Livi, and crafting with me and Mum, we crafted for ages, made bees out of pompoms and sticks and balloon people (thanks Mia and Trina). Then we hung the paper cranes that Nurse Romina made us around the room. Then time for rest with Playschool and afternoon ABC Kids.

All is well in Immies medical world; with talk that if she keeps tracking well we will be home next week. They will begin to stop/ slow down the antibiotics, and other drugs, though still are trying to get a rein on Immies potassium and phosphate levels (very normal after mega therapy). The morphine will begin to be turned down, and the TPN feeds cut back, and the NG tube feeds will pick up the slack. Immie is still very sore in her mouth and tummy and can’t swallow anything....so it’s just waiting and seeing...

Tonight I am going home for a lovely rest, I CAN’T WAIT!!!, and then Sunday Mum, me and Livi are hitting the Subiaco Craft Fair and another one too.

Incredibly Immies counts today were amazing
Counts –
Red cells – 84
Platelets – 24
Neurophilis – an Incredible 2.18
(A huge jump from yesterdays 0.53)

Love Us xx
http://picasaweb.google.com.au/theholmesgang/DayEighteen#

“Children are the world's most valuable resource and its best hope for the future”
John Fitzgerald Kennedy

Whatever they grow up to be, they are still our children, and the one most important of all the things we can give to them is unconditional love. Not a love that depends on anything at all except that they are our children.”
Rosaleen Dickson quotes

Day Seventeen

Good Evening all,

I think last night we had the best sleep we have had since last week, yes a few wees, a pump malfunction, a line that leaked blood onto the bed and just prior to ward round (of I like to call it the gold fish bowl as there is about 20 people looking at Immie through her door) Immie chucked the tube up. Though still a good night, actually got some sleep!!!!, not sure how much but some??, also no temps and no throwing up (woohoo)

Immie awoke the morning with an incredible gumpy bear attitude, telling everyone off, and would not even let Nurse Shell do her blood pressure. Argued with me that she definitely did not want a shower, but guess what she got one anyway. Then shortly after the shower, we got back to the big and chucked the tube up (as meintioned previously) after that Immie was a different kid, laughing at The Night Garden and Playschool.

At about 10.30 after checking counts the tube was reinserted, with much tears, I honestly believe for her the tube is a mental thing, she associates it with her not being well and being controlled. After the tube is reinserted the drool starts again, and the miserable little girl returns. Though after having the tube inserted today, Immie actually perked up a little and played with Aunty Livi and Mum. This was just wonderful to see, though after a short while she was exhausted again and fell in a heap. We have been told that it will take Immie quite a while to regain her stamina and endurance.

In the middle of the afternoon the fantastic clown doctors arrived Dr Wally is Immies favourite clown doc and he was joined by Dr What, they do a fabulous job at making the kids smile and laugh. Immie was very happy to see them both. After that she rested, the poor sod was a bit unsettled as she has to have 20ml of phosphate (one of the many things that the mega therapy knocked out of her system) twice a day (I think) down her tube, and it’s a bubbling mix, so you can imagine how it messes with ulcers in your tummy. Late in the evening, Kody and Daddy arrived for a visit with the beautiful girl.

Immies counts today were
Counts –
Red cells – 86
Platelets – 50
Neutrophilis – an Incredible 0.53 (go go stem cells)

Good night sweet people xx

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Day Sixteen

Hi

Immie and Jas had a semi ok night last night, normal chucking, weeing, temps etc, but a allocated three hours of sleep between 2am – 5am. At 5am Immie managed to chuck up the ng tube out the mouth (yuck, yuck, yuck). Apparently after that she really perked up asking Jas to read the book Mum had bought for her the weekend, then there was even some cutting done and then more resting and watching tele.

When Livi and I arrived she looked average, but after a good chuck she settled down and was the most perkiest I have seen her in days. Mum arrived and we were even blessed with a gorgeous Immie smile – WOW!!!. Immie was chuffed today as she received a new bear donated by BIG W Midland that even came with its own birth certificate (a very very cute donation).

Unfortunately the afternoon we had to reinsert the ng tube and the broviac (chemo line) dressing change. Immie received some more platelets and a bolus of morphine prior. She was very good with it all, she still kicked (only a little), cried and screamed, but it was the best I have ever since her do a dressing change. The afternoon she has not been to happy, though still comfortable, just so much mucus rolling around her throat, which makes her and us gag (yucky). She finally had a sleep the afternoon after being up since 5am at about 4pm the afternoon.

Began the TPN (Iv feeds) yesterday, though she will still continue getting Ng tube feeds as well. Immie is still on a ton of other medicines, very, very confusing, and has seven pumps now running, normally at the same time.

The best news we received today was her counts, her neurophilis (immune system) have shown some improvement, they have jumped to a major 0.10, this is really great as just yesterday they were 0.02 – woo hoo.

Of course this is just the beginning, of the journey, we just have to still keep her somewhat in a bubble, as we don’t need any extra pressure on her immune system. An infection right now would mean we would take 5 steps back.

I have been so rapt by all of your support and the fact that so many are reading the story of our little girl, thanks for the posts on the guest book and email, it helps more then you know.

I honestly hope she has taught you to cherish each day, and the incredible strength and lessons our children can teach us if we open our eyes, stop to enjoy smell the flowers and look forward to every single moment with them,

Love Fee

Counts –
Red cells – 91
Platelets – 21 (transfusion given)
Neutrophilis – 0.10

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Love this quote sums up about how I feel for my beautiful kids -

Before you were conceived I wanted you

Before you were born I loved you

Before you were here for an hour I would die for you

This is the miracle of life

Maureen Hawkins

Day Fifteen

Hi all

Last night I fell asleep leaning against the side rail of the hospital bed sitting on the floor waiting for Immie to pee…mmmmmm…anyone after a good nights sleep should try that, its actually like when you bring your new baby home from the hospital and you fall asleep feeding them and awake almost laying over them, or practically falling out of the rocking chair.

Immie's night was restless, (obviously) and I was so tired that I fell asleep between every half an hour to an hour wake up call…now that makes you feel like crap. Now that Immie has six (or seven as of tonight) pumps running it is a guarantee that one will run out oh…about every hour….blah!!!. Also Immie got her fiest back in the middle of the night instructing me which way she wanted to face on her potty when peeing and then was verbally bossy at everyone who dared open the door on the room the morning letting any light in (my lil vampire).

The morning was quiet, a few chucks then none till about 3pm. In the morning Livi came to sit with me, and bring me lunch. Then Jody popped in quickly. Mum came after lunch to entertain me again, and then tag time my fab hubbie turned up for his shift at the PMH resort. After letting Immie know all day that daddy was coming to watch her tonight, when I tried to depart I was faced with a emotional Immie telling me that she wanted me to stay and she would look after me..I bawled she bawled, and we all settled down, and Immie let me know that it was ok if I left now.

I went off to my learning English class, and then home to Butter Chicken (made by supa Livi) late tonight. I will be back at the resort early tomorrow morning as Jas has to get back to work, so looking forward to a sleep in my own bed.

Immie was very quite the afternoon, and seems a little bit more alert today. They still have her covered by all antibiotics, and the concoctions continue to be added, thank god, we a have capable nurses, docs and oncologists surrounding us. Immie began TPN the IV feed tonight to regulate all her missing salts/ minerals and give her nutrients (food), apparently 5 – 10 mls an hour for about 5 days is not cutting it, I know that would not work for me!!!.

Once again we just keep waiting for the stem cells to grow. I am finding it hard to focus on anything else happening out in the real world, I had not actually been outside for the last 2 half days till tonight. I am trying to be interested in whatever is happening with Kody at school or scouts though struggling. We are so very lucky we have our two saving angels, My mum and Livi, to prop up the missing parts in our life’s right now and support Kody (even if it is just reading mags with me, or running him to school and scouts). We feel very lucky.

Please let me know via email or by signing our guestbook located on the side bar if you are reading my blogs, it would mean a lot to know that I am not just babbling to myself and your voiced support helps us get through the day,

Thanks
Love Fiona

P.S please ignore any spelling mistakes half the time these blogs are written in broken spurts or on lil sleep ; P

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Counts -

Neutrophilis - 0.02

Red Blood Cells - 99

Platelets - 40

Day Fourteen

Hi everyone

Another long night and day for us all and our Tinkerbell girl Imogen, had more changes to antibiotics and all the blood cultures have come back revealing nothing. Typically a good sign as it means the temps are because she has no immune system (neutropenic), not because she has a nasty bug. The amount of changes made to Imogen’s drugs and the drugs hanging on Immie’s IV pole are incredible, just when you think they can’t add another pump another is added.

Immie’s body’s minerals are struggling to recover from the mega therapy so, replacement potassium, magnesium, sulphur, and phosphate are regularly hung and retested for levels during the day from finger pricks. Immies NG tube feeds have not been progressing very well, we are on our third type of feed, at only 10mls an hour. The docs have suggested that we could be headed to IV feeds, another balancing act when mixed with no immune system, antibiotics and the sugars in the IV feed (could increase an infection), though all the missing minerals can be added into them.

On a positive note Dr Nick, thinks her mouth looks a bit better, but her stomach ulcers are still not happy which is obvious when she chucks up blood (horrible horrible to watch). Immie has been very restless the afternoon struggling to get comfortable with her sad tummy and diarrhoea. Immie is now covered with every drug possible and has an increased morphine drip; it is just a long long waiting game. Dr Nick and I discuss what day we were aiming for a change in the neutrophilis counts I said Wednesday he said mmmm...maybe Friday or end of week. He has been a gem, giving Imogen the best of care, his dedication is inspiring.

I am very lucky most days to have my mum visit to give me a break and my sister to laugh with me about what the celebs are doing and saying as she purchased me every trashy magazine in the hospital shop. I am a celeb info queen (lol).

Waiting, Waiting, Waiting, come on you super stem cells

Thanks for all sending prayers, positive thoughts and everything else,

Love Fiona “Angelina Jolie or maybe Madonna” Holmes

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or

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Counts –
Red cells – 77
Platelets – 14 (transfusion given)
Neutrophilis – 0.01

Day Thirteen

Nurse Mels Last Day - Thanks Mel your rock!!!

Hiddey Ho

Today was a similar repeat of yesterday; Immie spent the night pretty miserable, started throwing up just before her anti-nausea drugs ran low. High Temps, more blood taken for cultures. Morphine bolus for stomach pain, with “the Daddy”.

Kods and I arrived at 10.30, just after my beautiful sister, Livi was leaving to go to a course at the Convention centre. Immie spent more time awake today, though very doped up and spaced out. She really wanted to sit up and watch, but her heavy head and eyes would not let that happen. Lots more things hung IV, to regulate her blood readings, more potassium, sodium chloride, sulphur, different antibiotics and later on in the day some blood.

She woke about Lunch and demanded that Kods came near to make the cardboard WALL-E with her, that peak of energy quickly came and went. Mum, Dad, Nigel and Jody came for a visit the afternoon, though there was little reaction to their visit from the usually happy and smiley girl.

It is incredibly hard to watch her so miserable with no fire in those eyes. Say a little or huge would be better prayer or mantra to those wonderful stem cells to start doing their important job for us please, it would mean the world,

Sweet dreams Immie - fairy girl,
Love to all Fiona

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or the whole album can be viewed via the link on the right of this page.

Day Twelve

Hi

Immie and I had alot better sleep last night, she only woke a few times for toilet time, and then because she wanted a drink. She then ended up with a stomach ache and had a bolus of morphine at 4am. We both managed to go back to sleep quickly, and woke up at the very late (LOL) 7.30am. Immie had a few chucks, then was given more anti nausea meds, and managed to calm her tummy down.

She slept on and off all morning and awoke around lunch to watch some tele, do mouth care (fun fun) and cooperate with Dr Nick’s check up. Dr Nick said her that she looks a little better today, though she still trying to struggle to keep the temps in control roaring to 39.7 at 3am the morning. More changing antibiotics, and if she gets more temps tonight they will bring in the big antibiotics (they cover every base, but only want to be used when everything else is tried).

Jason’s mum and dad (nana and pop) came to visit the afternoon, along with Jas and Kody, this made her perk up a little, though she still mainly just sleep. We also had my gorgeous Aunt and Uncle arrive to deliver us lollies and Immie a special Guardian angel charm. The more sleep the better this weekend we were told as it will help heal her quicker, so minimal visitors.

She received platelets yesterday as she only had 14 left, she has no neutrophils (immune system), still has good red blood cell numbers.

I never mention on stem cell day either but added with the stem cells Imogen received was a preservative that protects the stem cell when thawed out. This preservative makes the kids smell like smoked oysters, as it discrete out of them. I am happy to lay my tough beautiful girl no longer smells like a smoked oyster (ha-ha). I am going home tonight with Kods and my fabulous sister Livi and Jas is staying.

Please send some prayers that the little stem cells start working like mad, and she has a good night sleep,

Love to all

Fiona Holmes..reporting from Room 16 on ward 3b at the PMH resort

http://picasaweb.google.com.au/theholmesgang/DayThirteen18thOfOctober2008#

Counts - Red Cells - 87

Platelets - 50

Neutrophils - 0.01

Day Eleven

Hi

To put it bluntly today was crap. Immie had a really rough night, allowing us to see every night hour from 11 to 5. She was in quite a bit of stomach pain and then between that she spent the rest being sick, which involved a bed change every time. I awoke about 6.30 and quickly went off to have a shower and get a coffee. Immie dosed on and off, and woke several times in the morning to once again be sick. The codeine and other pain relief were not working anymore, our nurse Louise requested that the pain team be contacted and they arrived at 9.30am, and wrote up morphine to be given to Immie.

Then the Dr Nick and his team of Doctors arrived for check up, he came into have a close look at Immie and she put up a fight (a good sign that she still has fight in her and she is not just lying around sick). He got a quick look at her mouth and lips, which looked very sore, and her stomach pain is believe to be related to stomach ulcers and no stomach lining. As these cells are the ones that are rapidly replaced, and when there are not cells to do that job, as the mega therapy killed them, well the only way to get better is too wait for the magical stem cells to do the job and start making the necessary cells. In the mean time after the morphine made our Imogen much more comfortable, she was given more anti nausea drugs, drugs for anti fungal, drugs to increase her potassium, and a mixture of antibiotics. The oncologist and doctors are working together to find Immie the right mix to make her as comfortable as possible till her stem cells show evidence of their hard work, which will more than likely be up to 2 weeks.

Imogen slept on and off all day though managed to form a strong grip to Olivia’s hand when she arrived late the afternoon ( I am so happy she is here). Immie and my sister have an incredible bond..I am consistently calling Immie – Livi and Livi – Immie as they remind me of each other. Livi lay with her, and Immie dozed on and off, a little while later Jas arrived and we all sat with Immie till about 7pm when Immie wanted a bath, then she managed to chuck up on me. So after both being cleaned up, Jason went to pick Kody up from his Nana and Pop’s and Livi stayed a little while. Then she went home and the beautiful Sharon came to see me before her shift in ICU.

As of now Immie is laying watching Bottletop Bill on her little tele.

I hope she gets more comfort and sleep tonight.

Love Fee

http://picasaweb.google.com.au/theholmesgang/DayTenAndEleven#

Day Ten

Today began very quietly, Immie and I had a rough nights sleep, she was in a bit of pain, and then spent the rest throwing up. Immie managed sat up and crafted for a little while, after receiving a generous dose of codeine. She even managed to wave and smile to the ward walk around. Then she decided the best thing to do was sleep, Immie had a brief shining of light when The Ledgers arrived, especially seeing her best friend Penny. Though after a little while she slept again, they came bearing gifts and yummy food for me thanks guys. The Ledgers left after an hour or so, and mum had come to visit too.

Then at about 1.30, Immie chucked up all the gorgeous pediasure (NOT) from her NG feed, over the bed and herself, she then spent the next hour clinging to Mum. We managed to extract her and she went to sleep again, after mum left she slept then chucked again ending up with a bloody nose. Immie then watched a little tele, and slept on and off all weekend. Kods and Jas arrived at about 4.45pm, and there was little reaction from the beauty, a sure sign she is feeling off. She continued to sleep and woke with a temp of 38.2 degree, blood cultures followed, then my two beautiful boys went home. A long day....

Send me and my girl some restful, cell building sleep,

Love Fiona

Day Nine

Hi Fine people

Today started restful for Kody and me, though this was because we had a nice sleep at home. Over the other side of town, the other duo of the Holmes Gang had already been awake for a few hours before we arose. Immie had a rough night with many toileting mistakes, which involved many bed & clothing changes. Then at 3am, Immies tummy felt funny, and up came the ng tube. After that she felt much better and wanted to have a big chat....aww daddy did not think so, and Immie went to sleep till about 5.30am (kids energy!!!). Then cutting, then at 6.15am it was then surely a great time to trek around the ward on bike...and then walk the ward!!!..OMG...They spent the morning busy crafting and playing.

Mum and I arrived at 10am, with a USB cable for the talking dog, new pjs and Granma’s train set. Immie then went off to get her ng tube reinserted (not happy at all). At about 11.25am Immies stem cells arrived on the ward, a 16ml bag of life (incredible), at about 11.40am they were hung, and given over 15 minutes, so quick for all this work up. Immie was given a pre med that sedated her, so she slept through the whole thing. They keep a very close eye on her obs to observe any chance in her breathing or any reaction to the preservatives that are added to the stem cells to store. There was nothing different and she awoke about three hours later, and watch her tele quietly.

The afternoon I discovered another ladybird on my shoulder, another incredible positive omen, a sign of good luck, we totally believe.

At about 5pm, Immie went for a ride around the ward, did some more cutting and had a shower. The she went to sleep again.

Today was somewhat an emotional day for Jas and me, as the lead up to this 15 minutes has been huge, and the fact that the tiny bag is going to help her to make beautiful new cancer free cells is truly amazing. Without her incredible cells, she would possibly never have left the hospital again, her cells would have taken forever to return and she would more than likely have got an infection before that. We are forever grateful for the amazing PMH hospital and the incredible person who was the brains behind stem cell rescues, without that there would be no hope at playing the battle against the nasty beast of neuroblastoma.

Love and Happy thoughts for those beautiful new cells

The Holmes Gang

http://picasaweb.google.com.au/theholmesgang/DayNine#

Day Eight

I awoke the morning feeling very tired, after three nights of getting up every couple of hours to catch wee trays and that’s not including all the time you think they are calling but really it’s your imagination playing tricks. Then I went into Immie’s room, and there she was at 6.30am, as fresh as a daisy, with a huge grin and her arms stretched in a big hug waiting for me. Now how could I be grumpy or sad..with that gorgeous sight.

Immie’s morning was great crafting, making butterflies for her paper chain creation, then pancakes with Beth (the OT) and her friend, the puppet play with Carla. Also a lovely visit from our friend Cherrie..with incredibly a talking dog that can say Immie’s name, which is what Imogen has wanted since her birthday (incredible memory Cherrie, must be from all that chocolate you eat hahah), she also bought us some treats, Big thanks guys xx.

Then came the time to insert the nasal gastric tube, Immie had been very quite since puppet play in regards to this, so was unsure how it was going to go. To sum it up, IT WAS HORRIBLE!!!, she screamed , gagged and cried, and then she became like the care bear who has a grumpy cloud over her. It was so very very sad, she laid around for most of the afternoon, with a sad look on her face, and it was very upsetting to watch her try handle having the tube in again. She finally feel asleep in my arms while Fiona (stem cell nurse) spoke to me in regards to what was going to happen tomorrow when the stem cells are returned.

At about 6.30 Jas and Kody arrived, and managed to find a little piece of the normal Immie and went for a walk and ride around the ward. Tonight Jason is staying with her, and I am home now with the beautiful Kody. At 11pm tonight, the huge hydration will begin to enable the stem cells to be returned, tomorrow in medical terms is called day zero. She also had her first nasal gastric feed tonight; the tube will hopefully only be there for a little while it’s just to ensure she does not lose too much weight.

Send us some extra hugs, prayers and vibes for tomorrow, I think we will need them,

Love The Holmes Gang

http://picasaweb.google.com.au/theholmesgang/DayEight#

Day Seven

Howdy All

Today began with a gorgeous big smile from our incredible Imogen. She did not want to watch tele (how boring), she wanted to craft like mad...and she did, cutting, sticking, threading and this was at 6.30am. I think what most don’t realise, that the job you have when you have a sick kid who is isolated for days on end, is the energy used trying to entertain them. Instead of them going off to play with their sibling, watch TV, jump on the tramp, be outside..you are their one source of entertainment from dawn to dusk. I have a blast spending a lot of time with my gorgeous girl, but boy is it exhausting entertaining and amusing a 4 year old, who is still fighting the effects of chemo, so is still up for a 2 hour marathon of paper chain making. Immie’s counts are still good, they have started to dip a little, her appetite is up the creek and she does get tired much easier (though not today!!!).

Tomorrow could be tricker, the nasal gastric tube will be reinserted, as her weight is waning and every time you mention a medicine she spews. Immie and me have had a few chats about it, and I have basically explained it, that if she wants to grow up like mummy she has to have it. Right now, she thinks being as big (I am thinking maybe tall as me lol) as me, would be fantastic (isn’t funny how when we are kids we want to grow up and when we are adults we want to be kids!!). Tomorrow will show how able she is to cope, there is sure to be tears..poor sod : ( . Anyway we spent today, crafting, playing music with Louise, playing with Kody the big brother and Granma, bathing, singing and enjoying time together.

I am so grateful for all this time I get to spend with my our beautiful girl and that mum was able to bring Kods in to see us today. I am also grateful to all the fabulous nurses, doctors; help staff and oncologists, we are so lucky to have our health care system.

Thanks for reading

Love Fiona aka The Holmes Gang xx

http://picasaweb.google.com.au/theholmesgang/DaySeven#

Day Six - wow!!

Hi people,

Today Jason turned 30 years old ...wow!!!. We both stayed at the hospital last night, so then we were all able to awake together the morning, well actually Jas got up early with Immie at 5 .30 and let me sleep in...It was great to be here together, I really miss being all together at home.

Jason and Immie opened his present...wow an empty Ipod nano case...hahaha fill it yourself I said...nah its here but being held in Mums name at a courier place and she has been away crafting for the week, so tomorrow Jason will actually receive his gift!!!. At about 9am, Mum and Dad arrived bearing a big gift...a garden sprayer wrapped in 15 blocks of Cadbury chocolate, yes every variety. Then Nigel and Jody came with a Itunes voucher. We then had chocolate cake with no candles, so we did not blow the oxygen cylinders off the wall. Immie then proceeded to be sick, and then gained a second wind...playing with Granpa for ages, constructing a string version of him and her.

At 11.30 all the chemo finished, and normal saline (hydration) was hung. Then it was time for rest, and I went for a big walk, while I was away Immie finally decided undo the constipation and after rode around on the ward like a mad women. Then back for a rest, some Dora stickers and detailed describing to mummy about what was going to happen next on three episodes of Dora the Explorer. Then Jas had to leave for home. After a little more craft, gluing, cutting and sticking and then another chuck, Immie was back on the bike cruising the halls.

Then back to get ready for a bath, then some more Sponge Bob, which is were she finally started to catch so real zzzzzz's.Into bed, for some really sweet dreams. Tommorow will bring another day of rest, her counts are still good, so she still has quite a bit of energy. We are all coping well, though we realize its only Day six, I am so grateful for Immie being well, smiling and giggling and Wireless broadband.

Love to all

The Holmes Gang xx

http://picasaweb.google.com.au/theholmesgang/DaySix#

Day Five

Hi

Today we only had two chemo's running and as of lunchtime tomorrow, Immie will have finished her last ever chemo, WOO HOO!!!. Immie was a little more tired today though still able to get to get a good giggle going on when Rhylee (her cousin) and her had a tickle battle..(very cute!!!). The Holmes gang from Hyden came to visit today, and also my fabulous mum and dad, so by the end of the day Immie was knackered.

The afternoon dragged on and Immie awoke with a big tummy ache, after struggling to go to the toilet she received meds to help the action and then she proceeded to chuck up...off she went to have a bath and then snuggled in her pjs and went to sleep.This was the first time we have had Immie sick from the chemo and god it was hard to watch, our invincible girl crumbling and there was nothing we could do, besides hold her hand and pat her head : (. Tonight both me and Jas will stay here with her, as Kods has gone to his dad.

So the ugly chemo is beginning to creep through her body, after tomorrow lunch, she will have three days of rest and receive her stem cells back on Wednesday. This then means it will be up to her body, and the waiting game of how long it takes to remake all the cells her body needs. Typical it takes approx two weeks to begin to see a difference in the blood counts, and about 6 weeks for them to be up at a good level.

Today is Jason's last day in his 20's...hahahahah...tommorrow he turns 30 (like off cream as my friend Margaret informs me, it is the only time you turn..any age).

Sweet Dreams

Love Fiona and Jason xx

http://picasaweb.google.com.au/theholmesgang/DayFive#

Day Four

Hiya

Yeap, its Day Four since we checked into PMH resort. Today began with Immie awaking and not reacting very great. She laid around most of the morning, looking tired, this was possible as she had still been awaking during the night to do massive wees (from the chemo that is a diuretic) and the small fact that....she is having mega chemo.

Then suddenly when I thought this was how we were to spend the day, Bumpa (Granpa) arrived, well up jumped Immie and performed with Bumpa a very animated hip swinging fish catching game (very funny). Everyone who had seen her earlier could not believe the change, she obviously had been craving a new play person. This is how Immie remained for most the day until the day drew to a close and then she was quickly to point out that a bath was promised and that she would just lay and have a rest with her eyes resting holding daddy's hand hahaha...two seconds later at 6.30pm she was away in the land of dream.

The only really difference to Immie personality or actions right now, is the lack of her eating, all her personal favourites like chicken risotto have been kicked to the kerb. We were prepared for this and Immie will be having her N G tube reinserted next Tuesday, as the last thing we want is for her to go completely backwards in weight.

Tonight I came home with Kods to spent time with him and bake the cake for the birthday boy on Sunday, yeap Jason is finally joining us all in our 30's - hahahahaha...I can say that because he gave me plenty of grief when it happened to me.

Thanks once again for all the support

photos from today -

http://picasaweb.google.com.au/theholmesgang/DayFour#

Love the Holmes Gang xx