Emily's Journey

The original purpose of this blog was to keep people informed throughout Emily’s Journey.

Yesterday a celebration was held to remember her life. We all have our own memories and will keep her in our hearts.

This blog will not be updated again as we give Emily’s family privacy to grieve and forge a new ‘normal’ for their lives.

The support generated through this blog has been tremendous.  Thank you.

And also, we’d like to let you know that the money raised recently covered all expenses and allowed for Kath and Gary’s wishes to be carried out without the burden of financial pressure.  Thank you so much for this support.  We will now be closing the account.

Vanessa and Leona

Tomorrow there will be a private closed funeral for Emily.  There will be 25 people at this funeral at Katherine and Gary’s invitation.

Just to confirm, the public celebration will be held on Sunday 4th November at 2pm at the Rolleston Community Centre.  This will be a child friendly memorial and everybody is welcome.

If anybody is unclear, please feel free to contact Vanessa through the ‘Contact Me’ link on this blog.

A memorial service to celebrate Emily’s life will be held on Sunday, 4th November 2012 at the Rolleston Community Centre, Rolleston Drive at 2pm.  Please wear colour (Emily’s favourite colour was orange – even if she always wore pink!).  This celebration is being planned with children in mind.

Please ensure your shoes are non-marking, stiletto heels are not allowed in the stadium.

Kath and Gary have requested no flowers.  In lieu of flowers, you may wish to make a donation to a charity of your choice.

Hi Everyone,

We (Leona & Vanessa) are feeling completely helpless watching on in these final stages, and we know you all are too.  As you know, Kath and Gary have expressed their desire to have this time as a family and no practical help is wanted.  We really want them to be able to continue to focus on Emily, Jack, Charlotte, Luke and Alex without the burden of financial worry.  Fundraising is the only way we can think of to offer help and support at this time.

There have been considerable efforts made to support Camp Quality and Chase After a Cure throughout Emily’s illness, two causes that will continue to be important to the Wooddins, however we feel that donations would be of most benefit to them now.   This may enable them to have the option of Gary staying home from work and will contribute towards other upcoming costs.

A bank account has been opened and will be managed by Vanessa (if you want confirmation of your donation, you can email via the ‘Contact Me’ link to the right of this post).  Any donation, no matter what size, will make a difference.

Please know that there is no obligation for you to donate, this request comes from us standing by and wishing there was something we could do.

Bank account details: ASB Bank
Account Number: 12-3240-0167567-00
Account Name:  V M Palmer on behalf of E Wooddin
Ref:  It’s up to you if you want to put a reference or if you want it to be anonymous
Swift Code:  ASBBNZ2A  (for overseas people).  This is all you will need.

Vanessa & Leona

Hi everyone,

Emily is much the same but more lethargic each day.  Everything is being well managed at home pain wise.  She is still on oral meds though may need to go to a morphine pump if taking pills becomes a problem.  Just trying to get through each day.  If I don’t return phone calls, answer the phone or reply to texts it is because I am either with the nurses (sometimes twice a day), sorting medicines, tending to Emily, feeding Alex, chasing a toddler around or trying to keep things normal for my kids.  Due to the volume of phone calls, texts etc I may not be able to respond.  Please don’t take it personally, I’m just beyond busy at the moment (that is the understatement of the year).

We’re feeling very overwhelmed as Emily’s health declines day by day and just need to keep calm and carry on.  We’re enjoying our time with Emily and just having close family around at this time.  Emily isn’t well enough for visitors any more and needs a low stimulus environment.  She watches DVD’s and drifts in and out of sleep these days.

It is our time with Emily now.  Rest assured at this stage she is pain free and settled.  We will update in a few days.

Kath

Emily is much the same but the gradual decline is evident.  Em now has swollen puffy legs due to her liver and/or heart beginning to fail.  The legs are swollen due to the fluids in her body pooling to her peripheries to take the pressure off vital organs. She is still passing the occasional fresh blood clot from her nose and her right eye is bloodshot.  She is not in pain thankfully as this is being well managed. Those who haven’t seen Em for a while would be quite shocked I’m imagining.  Sorry if this is too graphic but it is the reality of the situation.

Em  is more tired and irritable than usual and finds the changes in her body upsetting.  It is like she has the mind of a nine year old in the body of a 90 year old.  I have told her it is due to the neuroblastoma.

Needless to say, juggling Emily’s emotional needs and medications, feeding a baby and managing two preschoolers and a busy seven year old is proving to be the busiest and most stressful time of our lives. It was our choice to have five kids but not our choice to have cancer invade our lives.  We will just have to keep on keeping on and make these last weeks (our gut feeling is weeks) as nice as possible for Emily and the other kids I guess.

Thanks again to those who help with the middle three kids so Gary and I can concentrate on Emily and Alex.

Kath and Gary

Hi everyone (A fairly graphic account of Emily’s current health status …)

Emily is looking beyond terrible at the moment health wise.  Very yellow/grey looking and is slowing down a lot in terms of everyday life.  She is very hunched over when she walks now and just looks so so sick :(  She is having minor nose bleeds due to low platelet count and could have a big bleed anywhere in her body at any stage. So frightening and just heart breaking for us.  The pattern seems to be that she has a big decline then is stable for a while.   I am unsure as to how this recent decline will pan out??  My gut feeling however is that this won’t be drawn out for months anyway.  Gosh no parent should have to be writing such words about their child but this is the reality of the situation and quite frankly it sucks!

The tumours on her skull have grown significantly over the last couple of weeks and I suspect she has tumour activity in her abdomen as her belly is very distended, and she is having a lot of pain in the rib region.  Her bruised and swollen eye lid is still apparent also from the tumour in the eye brow region.  She is on an even stronger dose of oral morphine now which seems to be helping a lot, and the arrival of her baby brother Alex is a nice distraction for her at this time.

A good distraction for me too to be honest.  Emily is very calm and settled and constantly talks about her future in a very positive light.  Her latest goal is that she would “quite like to be a journalist and get a puppy when she gets her own apartment.”   Who are we to shatter her hopes and dreams by telling her this won’t happen.  I certainly won’t be.  She is quite content watching movies and still has the energy to chat lots, laugh lots and argue with her siblings which is a small blessing I guess.

We are continuing (at this stage) to invite her friends over when she is up to it for a short catch up.  We don’t treat her like she has cancer but it is apparent now that her activity levels have declined a lot so I need to be mindful of her capabilities so she doesn’t overdo it and end up in pain.  She is literally running on empty as her iron levels (haemoglobin) will be next to nothing as the Neuroblastoma will be inhibiting the production of red blood cells.  This would explain her dreadful colour also.

Gary and I are just enjoying being parents of five children while we can and enjoying the small things like watching movies with Emily and recording Emily do such things as help bath baby Alex and read bed time stories to Luke.  We continue to put on our poker faces though this is proving very difficult for me at the moment with all these post baby hormones.  Gary is finding it particularly difficult at the moment too understandably.  I think having a new baby really heightens emotions, both happy and sad ones.

Whilst Emily has slowed down, she is NOT bed ridden and is still very much “living” life and enjoying the small things.  Alex is her favourite “small” thing at the moment and last night she said to him “You are such a precious wee boy aren’t you Alex”.   She is such a kind girl and I am so proud of the “9 going on 20 year old” girl she has become..  and I tell her this everyday :)   She is a well adjusted child and we have given her a great life and will continue to do so….

Thanks again for meals/vouchers and practical help with our other kids.  A special thanks again to the staff at ” The Cat’s Pyjamas” Preschool for taking such good care of Charlotte and Luke.  Under normal circumstances I could deal with my little ones, but this is far from normal circumstances and you take the pressure off immensely.  Another special thank you to Rolleston First Learners preschool for the amazing fund raising they have done in the recent weeks.  Such kind, genuine people in our community who help out practically whilst being mindful of our need for space.  THANKS.  We really do appreciate everything.

Kath and Gary

For those that may not already know, our 5th child Alex Robert Wooddin was born on October 5th at 4.47am weighing 7 pound 1 ounce. He is perfect and his big brothers and sisters adore him! Busy times in the Wooddin household!

Kath & Gary

We know many of you are excited about meeting Alex but please remember that unannounced visitors do not work for the Wooddins.  At this stage visitors need to be by invitation only.

Emily drew this picture of Smurfette on the magna-doodle – what an awesome artist!

Not much to report other than that Em is still managing reasonably well on her current pain relief regime . The morphine is giving her upset stomachs off and on. She can be feeling good in the morning and terrible in the afternoon, or vice versa. We still can’t plan one thing and even when we try sometimes we have to cancel shortly after making that day’s plans. So so frustrating. The only thing we know for sure is Em is going to have another sibling within the next couple of weeks! Something to look forward to. Em is generally happy when pain free. The other kids are all doing really well and the dynamics between all the kids at the moment are great. My gut tells me we are making all the right decisions for them and giving them all as much information about Emily’s illness as they need to know right now.

Kath & Gary

Hi everyone,

Emily seems pretty settled at the moment and seems to be taking everything in her stride. She has the occasional melt down but she is more than entitled to those.  Too tired for school but seems very content just having nice times at home with her family. Emily is still playing with her toys, very chatty at times and reading lots of books.  She has the occasional burst of energy which is nice to see.

The pattern lately seems to be that she has a REALLY bad day pain wise followed by a couple of good days.  So we roll with the punches, adjust medications where necessary and take each day as it comes.  We can’t plan much, but what we are able to plan is dictated by her needs on the day.  For example, yesterday she was well enough for me to leave her with Mum so I could take Jack to swimming lessons.  I left her with the medicines she may need while I was gone for a couple of hours. It was nice to spend some one on one time with Jack.

The tumors on her head (there are about ten or so now, varying in sizes) are still giving her grief now and again.  She calls them her lymph nodes so I had to tell her today that the lumps were in fact Neuroblastoma tumors.  She said to me “Does that mean they will turn into a brain tumor?”  I said calmly,  “I have no idea what they will do Emily”.   Emily then reassured herself that they were on top of her skull so that wasn’t so bad!  She really is amazing …

Not much else to report, other than this journey sucks, and even when Emily is having ‘good’ days it still sucks because having good days does not mean she is getting better… A tough pill to swallow.

Gary and I would like to thank everyone again for the ongoing support.  Fundraising (for our family and charities) , meals etc are all so appreciated and help so much.  We can’t thank you all individually but please know we really appreciate each and every one of you. Thanks also for texting or ringing first before coming over.  Unannounced visits just do not work for many reasons.

I have a lot of people requesting play dates/time with Emily and their kids which is very kind but super hard to organise :( Due to the unpredictability of all this I have to wing things on the day, so I will text people on the day if she is up to it and if you can squeeze her in then that is awesome.  Emily knows her capabilities so I will let her initiate these things.  She won’t be having sleep overs anymore as we may need the district nurses to come out during the night and would not want to put that burden on anyone, plus I would just rather her be at home with us at night time.  Just so hard to make plans which is a very frustrating aspect of this cancer journey. Making plans is such a normal aspect of life that we take for granted.

The new baby will be here soon so I am trying to get things in place (medication wise) for when I have a couple of days rest in hospital. Nice to know the district nurses are available 24/7 should they need to help with pain relief.   Will be hard to be away from Emily though.  Luckily she has such a switched on Dad who will know instinctively what to do :)

Kath

Hi everyone,

The last few days for Emily have been really up and down. Friday was terrible. She was in loads of pain, sweating profusely, had three sleeps throughout the day and barely ate one thing. She was seen by district nurses and her morphine doses have been increased should we need to give a higher dose (we haven’t had to yet). Emily has developed bruising and swelling on her right eye lid. This is likely a result of tumor activity in the bone above her right eye. It looks terrible :(  Another reason for the bruising is likely to be due to the fact that the cancer in the bone marrow is inhibiting the new development of platelets. Low platelets = bruising easily. The cancer in her bone marrow will also be inhibiting the production of red blood cells. Red blood cells carry oxygen around the body so as these diminish she will become more and more lethargic. Sometimes understanding the physiological aspects of this disease is a curse. But then again an understanding of it helps me to process what is happening, if that makes sense? Either way this disease is cruel for everyone involved.

So… Friday was terrible …..then on Saturday… she woke up a different child! She was animated, pain free, ate breakfast and had a settled day with not one complaint?! This is such a fickle disease.. hence why we cannot plan one single thing more than a few hours in advance. Who knows what tomorrow will bring?

Although Emily is a half glass full child generally, right now she is feeling a bit ripped off with life, and I can’t say I blame her. All she wants to do is go to school and be a “normal” kid.

I am a grumpy cancer Mum today but as always I will put on my poker face and be strong around Emily like I have tried to be for the last 3 years. It is exhausting, but worth it to keep her stress levels to a minimum.

P.S  – 20 days til baby’s due date – could be another reason why I am feeling a bit grumpy (curse those hormones ; ) ).

Come on baby number 5 – we all want to meet you! :)

Kath

Hi Everyone,

Emily turned 9 on Monday and spent the entire day at school at her request. She had wonderful birthday celebrations and was spoilt rotten :).  Thank you to all that made it a very special birthday and for all the gifts/cards in the post.

Cancer wise, Emily’s pain is still well managed.  She commenced another drug for nerve pain which seems to be making a MASSIVE difference to her leg pain, mobility, eating and general quality of life.  Just being able to bath herself again recently (due to the decreased pain) has done so much to boost her morale.  No independent 9 year old wants their Mum to bathe them.

Though she is feeling better pain wise, she is still very tired and not up to going to school (her birthday was an exception and she made such a huge effort :) ).  She is hoping to go tomorrow for school photos.  Fingers crossed that can happen.  The 3 lumps (neuroblastoma tumors) on her skull are now starting to give her some minor grief at the moment, so we are not sure where to go with that.  It is just one constant challenge after another, and like we have done for the last 3 years we have to roll with the punches and constantly chase and manage the pain.

Em and I are managing lots of rest while the wee ones are at preschool and I am finding this time invaluable for both my physical and mental state of mind, and it seems that Em is too. Thanks to those who are respecting our space at this stressful time.  I am due to have our new baby in 24 days (give or take a few days) and Gary will be taking some time off work from there on which will be great for many obvious reasons. We can’t wait to meet our new addition!  Jack is especially excited and has been so interested in this pregnancy.

We are appreciating the space we are being given and we will be proactive in organising things for Emily should she be up to it on the day.  We literally can’t plan more than a couple of hours in advance.  We totally made the most of Emily’s remission and did heaps of exciting things, so if quiet times are all she gets from here on out then we are at peace with that.  We get pleasure out of seeing her laughing at a funny DVD these days as laughter really does make you feel better!  She loves the English comedian “Miranda” and imitates her very well!   Thanks to those of you who took the time to give her heaps of cool experiences and spend quality time with her while she was in remission :).  She really has had some awesome experiences in her 9 years and we don’t feel this sudden urge to send her to Disneyland or anything like that just because her life time with us will be un naturally shortened. She is quite happy where she is and told me yesterday that she can’t wait to tell her own kids about her childhood :(.  As sad as that is, it has given me peace that we have always made the right choices for her.

Emily will tell me if/when she has the energy to play with friends etc and I will organise it on her/our terms : )

Kath and Gary

Hi everyone,

Emily’s pain is still well managed at this stage. She has required extra morphine doses for break through pain on a couple of occasions but on the whole she doesn’t complain much. She is a tough cookie. Goodness knows what she is actually putting up with without letting on. Spends most of her days reading ( often cards and things from class mates :) ) or watching TV. Tires very easily and even a trip to the DVD store a couple of days ago wore her out. She is limping a lot and not up to going out much to be honest. We are having lots of quiet happy times at home, though the morphine is still making her quite tearful and a lot of my day is spent reassuring her. It is emotionally exhausting for both her and myself.

I felt the need to tell her yesterday that the pain in her legs was from the Neuroblastoma ( as I am not sure that she believed the Oncologist – or didn’t want to when she was told a few weeks back ). I figured if many kids in the community know that her cancer is back then she should definitely be aware of what is in her body.  She kind of shrugged it off to be honest.  I guess it is difficult for her to link the pain to cancer when her pain is so well managed this time around with Morphine etc, unlike prior to her intial diagnosis in 2010 where the pain wasn’t managed for 9 weeks because it was assumed the pain was from a virus! One saving grace is this pain relief!! ( The only saving grace :( )

Although we have ensured Emily understands that her cancer is back we have NOT told Emily her prognosis and to be honest we will not be. We just can’t bring ourselves to tell our child such a thing!  As I stated in a previous blog I have no problem with what people tell there kids but PLEASE PLEASE be aware that Emily knows nothing more than her cancer is back. I really don’t want anyone telling her about her inevitable prognosis.  I feel that this blog is more for adults eyes now. Children don’t need to be reading the nitty gritty about Emily when even she doesn’t know the half of it. We have enough emotional stuff to deal with without Emily potentially coming home from school ( if she ever gets there ) and worrying about what kids have said re her prognosis. Hope this makes sense and is not too blunt but I just want to protect her at this vulnerable time. I don’t want Jack to be hearing things about his sister either as he is already struggling with it all.

Jack has been very confused over the last few days also and had a bit of a melt down at school. He was worried that Em was getting sicker because she is never going to school and thought that he may have her illness too as he was feeling sick. I told him that Emily’s cancer was back in her legs and that she is on very strong pain relief that makes her very tired, too tired to go to school. Jack said “Oh OK.” That is all he knows at this stage, and all he needs to know at this stage.

We really appreciate everyones love and support and understand you feel helpless and want to do things to help, but please ALWAYS text or ring first if you need to come around or want to help out. I will get back to you if/when I can. The day to day grind of this all is so unpredictable and at times the amount of attention can be all consuming and overwhelming, and takes away any control I have over normal day to day living. I don’t want the awkwardness of someone turning up when I am dealing with a horrible episode of Emily writhing in pain etc.

Right, I feel like I have been ranting a bit but it was really important for me to write all of the above. On a nicer note ….We are very lucky to have such awesome friends and family and live in such a supportive community with great people!!

Kath and Gary

Emily has just had a lovely 9th birthday celebration with a few of her close friends (her actual birthday is not til the 10th of Sept). Went to the movie “Brave,” out for lunch, and then back home for birthday cake. She had to take a morphine tablet after climbing the stairs to the movie theatre but was good to go after that! Miss independent wanted to get up those stairs herself thanks! Did not want help from her Dad or myself. We breed strong independent children it seems! ; )

Hi everyone,

Emily is doing ok. Very tired and sleeping in until 10 or 11am in the mornings lately. This will be due to both the stronger doses of morphine and the disease progression no doubt. She has required further morphine for break through pain a couple of times over the past few days but on the whole the long acting morphine is keeping the pain at bay.

Em is coping well during the day, mostly reading quietly or watching DVDs. Not eating much but drinking well.  Em and I have had some nice one on one time just chilling out over the last couple of days and will continue to have these quiet days to ourselves on the days where the little ones are at preschool. Down the track Gary will no doubt take time off work so he too can do the same. When that will be it is hard to tell. I have no idea how long this will all go on for??

Because Em has been sleeping in, we get the other kids ready for their day then I get all the house work done before she wakes (I don’t over do it I promise, just the necessities). Then I help to bath her, then we just chill for the rest of the day really as we are both exhausted by then! The bath was such an effort for Emily today and she felt very weak and dizzy. The morphine seems to be making her very tearful in the mornings also.

This afternoon Em received some lovely poems, jokes and a super hero story about her :) This made her day. Thank you room 8B3. I would also like to make a special thank you to the owners and staff at the Cat’s Pyjamas Preschool. They have been so accommodating with fitting the wee ones in at any time so Em can get some quiet time and we really appreciate it. Also to those of you who are doing meals and picking up my other kids for various things. THANK YOU. The other kids seem to be coping well with everything and Jack isn’t asking too many questions at this stage. He is kind of used to Emily having lots of time off school.

Also thanks to everyone for giving us the much needed space at this difficult time to focus on Emily (and the other kids) and get our heads around new medications etc, but most of all so we can rest and have our turn with Emily (we shared her a lot over the recent months ;) ). We need this space until further notice and know that you are all thinking of us :) We will filter visitors in when we have the energy.

Catching up with the Palliative Care Nurse tomorrow who will no doubt draw up some more morphine injections for if they are required over the weekend.

Will update again in a few days.

Kath and Gary

Emily is having a rest day tomorrow (Wednesday) and they will be having absolutely NO visitors.

Please respect Kath’s wishes, as she too needs some space and uninterrupted time to spend with Emily.

Hi everyone,

Good news and bad news. Good news is Emily managed to get to the Child Cancer “Stars of Courage” kids ball on Friday night and has had a great weekend with family that have come down from up north. Emily met her baby cousin Flynn for the first time and we got some cool photos of the cousies together. : )

Bad news is that last night Emily had horrific pain that required me to call the palliative nurses out of hours to come and help manage the pain. A tube was inserted into her arm that allows me to inject morphine via the tube. This manages her escalating pain levels better as the pain relief gets into the blood stream quicker than the pills. It was very upsetting to watch her in so much pain for nearly two hours until the extra pain relief settled her down. She was sobbing and writhing in pain and Gary and I could do nothing until the nurse arrived to draw up the pain relief. Hideous.

We plan to keep very low key for the next few days and again just need space to get our heads around the next phase of Emily’s condition so that I can focus on getting her new pain regime sorted (it is ever evolving as the cancer progresses). If we don’t answer the phone or reply to texts please don’t take it personally. I just feel really overwhelmed with offers of help and over stimulated at the moment with all this medical stuff and need to focus all my energy on meds and keeping the kids in their usual routine. I really do appreciate the offers of help but I just don’t know what we need right now and we are fortunate to already have a network of a few key people that are cooking, picking up kids etc. Thank you to everyone that helps and everyone that has offered. Very kind.

Please feel free to leave messages on the blog though as they really help :)

Kath and Gary

Hi everyone,

Emily’s pain is still being very well managed at this stage with the long acting morphine. Had a visit from the palliative care nurse yesterday and we have a plan in place for when pain worsens. Very difficult reading this plan but it ticks all our boxes in terms of how we want her pain to be managed.  Emily is very tired and anaemic and would benefit from a blood transfusion to give her a bit of energy for a couple of days but she has declined it so we will respect her wishes. She couldn’t see the benefit of spending hours in the hospital having a blood transfusion for the sake of some extra energy when she gets home. She said she would rather get energy from food and drink and that the blood transfusion should be used for someone who really needs it. Can you believe this kid!? A blood transfusion also involves an intravenous needle to be put into her arm. She has been there done that numerous times and does NOT want to go down that road again and I can’t say I blame her. Emily has attempted a half day at school today. Nothing like giving your child their morning dose of morphine and sending them off to school! ( She felt up to it so why not… ).

Apart from the ongoing mental stress for Gary and I, life remains fairly “normal” while Em is pain free. The hardest thing at the moment is finding the balance between telling her about upcoming events so she can look forward to them, or waiting til the day to tell her about fun activities in case she isn’t well enough to do the activities! We want to avoid disappointment for her, but in life people need things to look forward to! I hate that the luxury of planning anything more than a day or so in advance has been robbed from us. We are also struggling with how much info to give our other children. I think we will cross that bridge when we really have to and let them have as much normality as possible. Emily has been told by the Oncologist that her cancer is back and obviously she is not happy about it but said to me ” I am not worried Mum because it doesn’t feel like Neuroblastoma and this pain relief is really helping me.” That is where the conversation ended. Obviously it is Neuroblastoma but if she doesn’t want to think that it is then so be it.

In terms of knowing what to tell your kids about Emily’s situation, I really have no answers for you other than for you to tell whatever you think is right for your child. I would just appreciate it if the kids who play with Em try and have conversations other than cancer as Em is not interested in talking about it really. If she initiates a conversation about it then so be it, but that is not that likely to happen. I don’t want cancer to define Emily as she is much more than “the kid with cancer” (as we all know : ) )

If you are feeling helpless throughout this hideous journey and thinking of ways to help, perhaps consider donating some blood : )   Emily had numerous blood transfusions during her initial treatment and there are many more kids who need blood. One donation can save up to three lives. It is so easy to do and helps so much!

Thanks again for everyone’s support both emotionally and practically. The meals and transport of our other kids to various activities take the weight off tremendously!

Will update again in a few days.

Kath and Gary

Just a quick update to let everyone know that Emily’s pain is being well managed with slow release morphine 12 hourly .  We are able to give her extra morphine for break through pain if need be.  She hasn’t required the extra thus far.  She has been more content and can actually walk around now that the pain is being well controlled.  Eating remains a challenge but this comes with the territory. 

Emily was well enough today to catch up with a couple of friends – a far cry from Thursday when she was confined to the couch with unbearable pain and unable to move for herself.  She has lost a couple of kilos and her colour is dreadful but today she is happier in herself and that’s all we can ask for.

We are expecting this rollercoaster to continue and the oncologist could give us no indication of whether Emily has days, weeks or months left with us.  The palliative care team are amazing and are available for us to contact at anytime.   They are a fantastic support, as are our close friends and family. 

Thanks for all of the kind messages left here on the blog, your support is greatly appreciated.

Kath and Gary

Hi everyone,

Over the last couple of days Emily has gone down hill quite dramatically and is now requiring oral Morphine to control her pain. The pain in her legs is so severe she can barely walk. She had this pain at her initial diagnosis in 2010. Emily also found a lump on her head. Again, Emily had a lump on her skull when first diagnosed : ( It is now evident that the Neuroblastoma is what has been causing her “illnesses” over the past 6 weeks or so. She even required some sedation today as the pain was causing her a lot of distress and it took me two hours to get her pain under control. The palliative care team is on board and the main goal at this stage is to get her pain levels controlled so she doesn’t suffer. Once we have built up her morphine levels we may be able to use a Fentanyl patch which sticks to the skin and gives slow release pain relief for up to 72 hours at a time. Emily does not link her pain to cancer, or ever mention that it is cancer.

She is very lethargic and not eating much at all. We will take each day as it comes and just need time to ourselves to get our heads around this dramatic decline in health. We are unable to plan anything as she can be settled one hour and then in excruciating pain the next. We will let people know if/when we need help with things but for now we just need to remain low key and get Emily’s pain sorted. This is such a horrendous journey…

Keep an eye on the blog for further updates.

Kath and Gary

Hi everyone.

Just thought I’d do a blog update as a lot of people have been concerned as to why Emily has been away from school for the last couple of weeks. Thanks for your your texts. Apologies if I have been unable to reply.

Over the past two weeks Em has been having random pains in her back, legs and arms and spiking high temperatures. She is a terrible colour too. I am unsure as to whether it is prolonged flu or the cancer (I suspect the latter if my instincts are correct, and the likelihood of it being cancer progression is obviously very high given that she did relapse 5 months ago, and her symptoms mimic those she had prior to her initial diagnosis in 2010, just not as severe at this stage thankfully!). I will make sure she never feel the severity of that pain again!

Everything is being very well managed at home with just Nurofen and Paracetamol at this stage, and we are not requiring any help from the palliative care nurses other than to touch base occasionally over the phone etc. The nurses are great and trust my judgements which is really appreciated. Eating is a bit of a challenge but she manages decent amounts when her temp is stable. Cancer parents become obsessed with their kids dietary intakes as nourishing our kids becomes our only control really.

So basically we are just taking each day with Em and will see how this all pans out. Please know that Em is NOT bed ridden or anything like that and there is absolutely no urgency for us to have any help from you lovely folk, but know that we will definitely put something on the blog when the time comes that we may need help with meals etc (thanks so much for the recent offers though). We are just trying to be as normal as possible and fit in fun things and school when Emily is up to it. Planning things in advance is a luxury we don’t have as we have no idea what is around the corner and will continue to have no idea as we have no intentions of going near a hospital to be told what is in her body and whether or not she has weeks/months to live etc. Pain management and happy meaningful moments is all that Gary and I are interested in for Emily at the moment. She has had many adventures and has been living life to the full over the last few months, but for now I am happy for her to be hanging out with people she desires to be around when she is up to it. Her brothers and sisters are also a priority to Gary and I and maintaining the balance between Emily’s needs and the other kids needs is a constant challenge. Thanks again to those of you who over the past few months have take the time to give Emily loads of awesome experiences while she has been feeling great.

Emily is in great spirits at the moment and doesn’t outwardly link her pain to cancer. And without scanning Emily I really have no definitive answers for her should she ask why she is in pain??? I will probably say,  ” Whatever is causing your pain will be managed so that you are not in pain.” And I suspect she’ll say, ” It’s probably stupid cancer ” and I will probably agree. We will answer any questions as honestly as we can…..

For now everything is under control …but my mental strength and tolerance levels are constantly being challenged!  Plus I do get sick of talking about cancer all the time to be honest.

Thank goodness Gary and I have this new baby to look forward to in ten weeks. Emily and the kids are equally excited though Emily did talk to my tummy the other day and say “if you are a boy in there, can you please turn into a girl and if you do I’ll give you ALL my toys” …. It will so be a boy… ha ha

We will update the blog with any major changes and I will text friends to organise play dates and catch ups in due course. Em is happy and her pain is managed so we will just take it one day at a time.

Kath

Not the best week in the Wooddin household this week! Charlotte and Luke have had the flu all week, both spiking temps of 39.5 degrees at times and Emily has been experiencing ongoing back and leg pain over the last couple of days. Any bony or muscular pain Emily experiences concerns me as prior to her initial diagnosis in 2010 her bone marrow was heavily infiltrated with Neuroblastoma and the pain in her bones was HORRIFIC! Whilst her pain over the last couple of days has not nearly been as bad as the initial diagnosis pain, I had her checked out by the Oncologist at the hospital today anyway. Her pelvis was x-rayed to look for any obvious signs of tumor activity and her reflexes, range of motion in legs and hips etc were checked. Nothing blatantly stood out in the tests, however to investigate further Em would need bone marrow aspirations and a CT scan (with an injecion of dye to highlight the Neuroblastoma). Emily does not want these so we will NOT be putting her through them. And at the end of the day, doing the scans will not change the outcome unfortunately . The constant guessing re what is going on in her body whenever she experiences pain or illness is very draining and completely messes with our heads, but if she doesn’t want the scans then we will have to just live with the not knowing and cope as best we can I guess. Her needs come first and managing any pain will always be a priority. I also asked about doing the urine test to check for catecholemine levels (the hormone excreted by Neuroblastoma tumors) as this is a non invasive test for Emily that she would happily do. Docs said that doing this test would not provide us with any useful information as the hormone could still be present in the urine from the tumor she had in her jaw in March this year. So basically there are no non invasive ways of getting information, so we continue with the dreaded guess work.

Ignorance is bliss while Emily is feeling well but when she has pain part of me needs to know the exact cause. Such a catch 22!  Ahhhh cancer sucks sooo much!  Emily is also extremely anaemic at the moment but her energy levels remain really good???  She is amazing. I spoke to the Oncologist re an iron supplement for the anaemia, and basically, if the anaemia is due to the Neuroblastoma invading the bone marrow then iron supplements would be of no use. I am guessing that Neuroblastoma is the cause given that she has the same diet as my other kids and they are rosy cheeked and healthy looking, but without all the examinations I will never know for sure……???

So after the visit to the hospital today I feel like I am no further ahead (and cancer mums never have “peace of mind”) however for now the leg and back pain is being put down to sciatic nerve pain caused by Emily trying her hardest to walk on flat feet and over stretching the the sciatic nerve over the last few days!! Needless to say she is back up on her tip toes which is the least of our worries. I will be keeping an eye on her pain levels over the next few days and we’ll go from there. We have many a cocktail of pain reliefs including morphine for over the weekend should her pain worsen. She is watching a movie and singing along to it as I write this so hopefully sciatic pain is the cause of her current complaint and the pain will ease up!! WHO KNOWS??????

P.S. Just tucked Jack into bed and he said to me “Why did Emily get cancer?” And I said “Nobody knows why people get cancer Jack” and he said ….. “I think Emily got cancer because I hit her with a pole when I was 3” …..Not only does it mess with our heads as parents but it upsets Jack too. This statement came completely out of the blue. I have not even mentioned cancer to him for a very long time and he is unaware of what is yet to come… or is he more aware than we think?! Needless to say I completely reassured him that he was NOT to blame for Emily’s cancer. Poor wee man. 

Right now that I have had my rant I am off to bed after an exhausting week (thanks Mum for all your help with the kids this week!). Hopefully next week is more pleasant : )

Kath

Today marks 4 months since we found out Emily had relapsed. She continues to do well and is outside on the trampoline as I type this. Went to watch Ice Age 4 as a family today then the kids all devoured sushi for lunch. Em is still pain free and happy. Awesome!

Hi Everyone.

Emily had a great day today and got the opportunity to go to the art studio of Tony Cribb.  Tony gave her one of his tin man books with a personal message in the front.  Emily said in the car “I will treasure this..”

Tony painted a tin man picture titled “Bucketloads of courage” which he donated for an auction to raise money for Camp Quality.  This painting was purchased by a kind person who then donated it to Emily.

Emily continues to do well though is picking up every bug around at the moment. She appears to be symptom free on the cancer front and has had no complaints of pain. Again I have no idea what is going on in her body but the fact that she remains pain free is awesome.  We are touching base with the palliative care team on a weekly basis and I am taking great pleasure in telling then how well she is doing right now (aside from the coughs, colds etc…) Coughs and colds are “c” words that I can handle!

Last Wed, Thurs and Fri, we had the most amazing time with good friends from Wellington who came to spend two nights with us. Wee Abby that came to stay went through treatment with Emily and they had never seen each other outside of the hospital! They had an amazing time swimming, shopping, going to clip n climb, Lone Star Restaurant etc and I had a great time catching up with Abby’s Mum Shelley!  Was so nice doing normal things together and watching our kids have so much fun. I think Shelley and I were more exhausted than Emily and Abby when it was time for them to go home. The kids stamina is astounding! Thanks for coming to stay with us Abby and Shelley!

I would like to thank some of the other Wellington families we went though treatment with. These kind families, who themselves have endured the cancer journey sent gifts down to Emily via Abby and Shelley. Thanks Rach and Ian, Gabi and Millie, and Kat, Gavin, Angus and Phoebe. Very kind :) And thanks also to everyone else who takes Emily out and about, giving her lots of awesome experiences.

School holidays next week. I can’t keep up with Emily’s social life but going to try and have a few quiet days in between sleepovers etc so Em can have some down time and I can just chill out with all my kids. She has done so much in the last 3 months which has been awesome but needs a rest….  and I have a baby to grow.  15 weeks to go.  Em wants to come to the birth!

I will update in a couple of weeks,

Kath

Yesterday marked 3 months since we found out Emily’s cancer had returned. She is still holding her own with absolutely no medical intervention and looks great! We are continuing with the “ignorance is bliss” way of life for now and doing our best to not let cancer get in the way of living. So thankful she remains pain free and HAPPY.

Kath & Gary

We were supposed to have a follow up appointment with the Radiation Oncologist today to talk to Emily about how she is getting on since the radiation treatment she had to her jaw in March. She refused to attend the appointment saying “ What is the point in driving all the way there and all the way back (40 minutes each way) to tell them I am feeling absolutely fine?”.. Good point Emily. So I phoned and politely cancelled. Em knows her body better than anyone else and I instinctively know if she needs to be checked out. Emily isn’t going to let cancer get in the way of her life. Too many fun times to be had instead thank you very much! I do worry blogging about how well she is feeling at the moment incase I jinx it and she goes downhill soon.

Thank you to all the people offering her such awesome experiences.  Cancer aside, she is a very lucky little girl.

Kath & Gary