Emily's Journey

Here is a picture taken yesterday of Emily and Abbey at home.

Today is a good day.

We had encouraging news this morning.  Kath said the oncologist was ‘beaming’ as he told her that the results are showing the ‘best possible outcome expected at this stage of treatment’.  These results indicate that the tumor is shrinking and the chemo is having a positive effect.

Emily’s treatment will continue as originally planned, meaning there are still many more grueling and invasive procedures to follow.

There is a long road ahead but today it is nice to be able to share positive news.

Vanessa and Leona

Emily has had a settled couple of days at home playing with her much appreciated gifts from friends and family.

Kath has said “if there are no blog updates then assume that she’s had a settled and non eventful day at home with family, and the occasional friend, popping in when she’s up to it”.

Emily had tutoring this morning which went well.  She also had a visit today from her last year’s teacher and the Deputy Principal.

Vanessa and Leona

Today Emily spent the day in hospital having tests.  She had a bone marrow aspiration (under general anesthetic) and a CT scan.  These tests will give the medical team information on the effect that the chemo is having at this stage of her treatment.  Kath and Gary are not expecting to hear any results for some time.  Emily has been quite bright over the last few days despite the invasive treatment she is having.  Kath said, “She constantly amazes me”.

Emily and Kath enjoyed a visit with Tash who came from Australia today.

Kath’s phone is playing up – when her other phone is up and running she will make sure that people have her number.

Leona and Vanessa

The Wooddins have had a busy but settled time day at home today.

Kath and Gary would like to acknowledge the generosity of their family, friends and the wider community.  There are no words to express their gratitude.

Kath says, “Jack’s preschool, The Cat’s Pajama’s,  really is the cat’s pajamas!”  Kath said that they have been extremely accommodating throughout this time and have gone beyond anything she could have hoped for.

Leona and Vanessa

Emily and Kath had a better sleep last night back in their own room, after having an unsettled night in the shared room on Friday.

This weekend Emily has had 24 hours of chemo followed by 24 hours of post chemo hydration.  She will have a blood transfusion today and they are hoping to be back at home tonight.

It’s been really nice to see Nana Sue back for a visit this weekend.

Leona and Vanessa

Today Emily started her fourth round of chemo (pictured above).  They expect to be in hospital for the next few nights.  Tonight Em is sharing a room with another child on the ward.  The girls are excited about their ‘sleep over’.

Leona and Vanessa

Emily loves hanging out with Jack and Charlotte

Em spent most of today at the hospital having a blood transfusion and platelets.  She is back home again tonight.

Vanessa and Leona

This is an exert of the letter from Emily’s Oncologist (click on it to enlarge).

Emily is happy at home and her personality is back.  They are making the most of it before Em starts her next round of chemo on Friday, and are hoping to be able to stay home until then.  Kath is pleased that Emily’s temperature has remained stable.  They are going to the hospital every second day for minor procedures.

Despite how awful the chemo is, Kath said, “Em is actually better now than she was in the 8 weeks prior to diagnosis”.  The doctors did say that this would be likely.

Kath is halfway through her pregnancy and all is going well.  While things are stable at home Gary has been able to go to work.   We joked tonight on the phone that he must be exhausted after working a full day!

Please continue to write comments, as Emily is now able to see and read the blog.  She is really appreciating messages from her friends and was especially pleased to see the one from her previous teacher at West Spreydon School.

Em’s newest joke… “What do you call a fish with a phone?….. A cell fish”

Vanessa and Leona

Here are a couple of pictures of Emily at home.

This is Charlotte at home supporting Emily’s new look.

Today Emily was given laughing gas for a dressing change as she gets very anxious.  Kath said she was hilarious throughout the procedure as she had a silly grin and was very giggly.  This afternoon they went home.  All going well they will be home for 5 days.

Kath says, “We might be able to filter in a few of Emily’s friends but it will, of course, depend on her”.

Vanessa and Leona

Here is Emily at home on the weekend admiring Jack’s artwork.

Beads of Courage – 105!

Emily started her third round of chemo yesterday.  She is tolerating it well but is very tired.  Her mood is slightly better as she is adjusting to the huge changes.  This round requires her to stay in hospital.

Many people have been asking about last week’s scan.  This scan will not give any new information as it is purely for treatment purposes.  There will be no results to report.

Vanessa and Leona

Emily was providing a lot of entertainment tonight, texting her dad about leaving his tea cups around the room and not tidying up after himself.  Katherine was laughing so hard, she was crying.

Emily is neutropenic (meaning, in the most basic sense, she has no resistance to infection) so they were very lucky to be able to go home at all over the weekend.  Kath found it challenging at home being both nurse and mum.  In the hospital she can just be Mum.

Last night they started Em on IV antibiotics to bring down her temperature. Today she has had a good day.   We had a really nice visit with them tonight and Emily was her true self – we learned a LOT about Littlest Pet Shop!

Emily enjoyed reading yesterday’s comments from her friends.

Leona and Vanessa

Emily has been taken back into the hospital tonight because she has a high temperature and has been feeling miserable (the original plan was to go back Tuesday).  While at home she was fed via the nasogastric tube for 20 hours of the day which meant she wasn’t able to do much.  Although she didn’t have much energy, she did enjoy being at home.

Emily had visits from a couple of her friends.  Kath said that while she wasn’t flash at the time, she has retained every conversation and has been referring back to them when she is feeling up to it.

Vanessa and Leona

This afternoon Emily had another scan.  This scan will highlight exactly where the neuroblastoma cancer cells are in her body.  Yesterday afternoon a dye (brought in from Australia) was administered and left to disperse in preparation.  The scan lasted for over an hour and required Em to lie still, causing a lot of discomfort.  Again she was “a real trooper”.  Results are not expected for several days.

They are all now at home for the weekend, together as a family for the first time in 3 weeks.  This will be a special time, as even Jack has commented that it will be nice to “be a family again”.  They are under strict instructions from the hospital, that should anything change, they are to return promptly.  There may not be blog updates for the next few days, as we are very conscious that this will be a cherished time for them together as a family, and we want to keep interruptions to a minimum.  Gary is also looking forward to spending some time with his brother who has travelled down from the North Island.

Gary and Kath have found themselves on a huge learning curve, and even ‘going home’ presents many challenges of its own.

Emily’s hair is rapidly falling out now.

Kath and Gary have specifically asked us to thank everyone for their generosity and will try to thank everyone personally down the track.  They are overwhelmed with the gift vouchers, groceries, baking, meals, deposits etc, and are humbled by the support.

Vanessa and Leona

This is a picture of Emily reading a comment on the blog from Jaime Booth.

There is not much news to report today.  We’ll post a more comprehensive blog tomorrow night.

Vanessa and Leona

This was taken several days ago when Jack and Charlotte came to visit Emily.

This morning Emily went along with Kath and Gary to Kath’s 18 week scan.  The nurse wrote the sex of the baby on a piece of paper so Emily would get the news exclusively and be the one to pass it on.  We received a very excited text saying, “I will be having a baby brother love from Emily”.

Yesterday Em had a hearing test as one of the side effects of the chemo can be hearing loss.  The results were good and this will continue to be monitored.

Today Emily was able to spend a couple of hours at home with her family.  They have returned to hospital for the night.

Vanessa and Leona

Emily now has 69 Beads of Courage.

Kath and Gary have been looking forward to seeing her personality return for weeks now and at times today glimpses shone through!  Her mood however is changing quickly and dramatically.  Emily spent some time in the playroom today and has completed 2 of her worksheets.

If you want to help out with meals or baking please contact Michelle as she is co-ordinating this.  [email protected] or (03) 3228992

If you have contributed to the bank account and would like a receipt then please use the ‘Contact Me’ on this blog and we will arrange to send you one.

Vanessa and Leona

This is a picture of Emily opening a gift basket from Nana Sue’s work with her 2 grandmothers in the background.

Today Emily text her Dad (from Kath’s phone) asking him to pick her up a cheeseburger happy meal “and make sure you get a girl toy”.

Emily went down today to the hospital bookstore to buy 2 new books with the gift voucher she was given from Nobby & Helen.

Emily told us today that when Kath and Jack were visiting her and Kath was getting her handbag out of the car, Jack said, “Come on Mum, we don’t have time for this!”

As we were about to leave Emily said, “Can I tell you a joke?”

“Whats a cat’s favourite fish? …. A catfish”

Vanessa and Leona

Gary has had lots of questions from people about childhood cancer in New Zealand and has asked if some of the information given to them by the  hospital can be shared with everyone.

– In New Zealand approximately 150 children (0-14 years) are diagnosed with cancer each year.

– Cancer develops when a cell in the body, for some as yet unknown reason, starts to divide and multiply without the normal control.

– It is not yet known when a cancer really begins, but there is always a period of time before it becomes noticed.

– 8% of childhood cancers are Neuroblastomas.

This is a photo of Emily’s Beads of Courage.

Yesterday afternoon Emily started her second round of chemo treatment.  This is a different type of chemo from last time.  It is being infused over 24 hours and has stronger side effects.  At this stage she is tolerating it well but she is likely to become quite ill.  Emily is starting to lose her hair gradually.

The medical team are trying to keep Emily’s platelets up (clotting agent in the blood) as her nephrostomy tube (artificial opening created between the kidney and the skin which allows for the drainage of urine directly from the upper part of the urinary system) has been draining blood rather than its intended role of draining urine.

They will be doing an ultrasound later in the week to check the size of the tumor.

Reid’s comment, “Emily Kate Wooddin, you will still look beautiful without your hair, love from Reid” made her day!  She was so happy especially with a comment like that coming from ‘a boy’.

Kath said that Emily’s mood changes hour to hour but she’s such ‘a trooper’.

Leona and Vanessa

On Saturday a group of us got together to landscape Kath and Gary’s grounds.  The effort was co-ordinated by Steve and Desiree, who have done a tremendous job planning and implementing the garden.

The Gardens were planted and barked.  A huge thank you to everyone who helped.  Thank you to Paula for the fabulous lunch. Also, thanks to the electricians for your part in the working bee.

Katherine and Gary came home from the hospital and were amazed by the transformation.  They were extremely grateful and overwhelmed by the generosity of their family and friends.

Vanessa and Leona

This is a picture of Emily’s room and adjoining ensuite.

Yesterday Emily received two blood transfusions as her haemoglobin levels were low.

Kath and Gary are being honest with Emily about what is happening to her and what the treatments are doing to her body.  Yesterday they told her that her hair will fall out.  Emily was really sad and upset to hear this but settled relatively quickly.  Later in the evening she asked a nurse “Why will my hair fall out?”  The nurse explained about the damage chemo does to good cells as well as the cancer cells.  Today Emily said, “I think I’m getting used to the idea now.  I’m looking forward to it growing back thicker and more beautiful.”

Emily has been waking in the night and coming out with some profound statements.  She is obviously doing a lot of thinking.  She is an intelligent kid and is absorbing everything.

Today a play specialist came in and gave Emily some educational worksheets which she is excited about completing (she’s a bit of a geek just like her mum!).

Leona and Vanessa

This evening, Serena came into the hospital to paint Emily’s nails.  The middle fingers on each hand were left unpainted as they are needed for medical checks.

Today Emily had an ultrasound to check  her left kidney which has reduced to a more normal size.  The stent is helping to drain away the fluid retention caused by the pressure of the tumor pushing on her kidney.  There is no news yet as to what the chemo is doing to the tumor.  Kath is unsure as to when this will be checked.

Emily also had another blood transfusion today.  She has had no bone pain for the last few days.  Emily is still vomiting during the night and early in the morning but is relatively settled during the day.

Kath says “It’s a little like Groundhog Day around here.”

Emily has a bowl  in the toilet to catch her urine for testing.  Today Kath said she’d better use a different toilet and Emily said “yeah, cos then they’ll test yours and think I’m fine!”  Kath had mental images of the doctors testing hers and coming back and telling her that Emily was pregnant!

Kath was saying today that Jack has been fantastic and is being very good for everyone.  Charlotte is doing well.

Emily is trying to reciprocate with gifts – she has been making things for others during the day when she has been feeling up to it.

Leona

Emily says “Thank you for the presents and cards.  I am looking forward to seeing all of you when I’m feeling a bit better.”

Emily has been inundated with cards, letters and presents.  They are all very much appreciated.  Kath and Gary are having to send some things home each day as her hospital room is getting quite full!

Yesterday morning Emily sent Kath a text using Gary’s phone.  The text said “I am feeling happy today because today I get the tube out of my bottom”.  She was referring to the removal of her urinary catheter which had been driving her mad.  The removal of this catheter has allowed her to be a little more mobile and a lot more comfortable.

Emily is having rough nights with vomiting but is coping better during the day.   She has started antibiotics for an infection as her immunity is not flash with the chemo.

This afternoon, Emily was sitting in the lounge drawing and colouring.  She even made friends with another  patient’s older sister.  We were all very impressed with Emily’s awesome free handed drawing of a sheep.

Emily has a joke for everyone which she swears she made up herself –

What do you call a snail in a ship?……A snailer!

Leona

Emily was visited today by her brother, Jack, and her cousin, Jaymee.

Kath went out yesterday afternoon to attend a friend’s wedding ceremony which she really enjoyed. Last night Gary stayed in the hospital with Emily while Kath had a comfortable night at home.  Emily had an unsettled night but has managed to get some sleep throughout the day today.

Yesterday afternoon Emily was given another blood transfusion which perked her up a bit.  Today she had a few procedures done under sedation. She tolerated this well and even thanked the nurses cos ‘it didn’t even hurt’.

Many people have expressed concern regarding Kath’s pregnancy.  She is being closely monitored by her midwife and is eating and sleeping better now that the initial shock has sunken in.

Leona

This is a picture of the day room/lounge in CHOC.  Kath and Gary are spending a lot of time in this room to enable Emily to rest and have some much needed solitude.  At home, Emily enjoys being alone in her room and she is craving this time by herself.

Katherine has had a day of feeling incredibly sad, it’s fair to say she will find some days harder than others.  When talking to Kath today, she said “People need to know how sick she is.  She is not coping well with the constant intrusion from nurses, doctors and specialists.  She is feeling depressed and despondent. I don’t mean to sound negative, it’s just the way it is at the moment.  She is adjusting to big changes.   The saving grace is that she’s not in pain.”

Emily will be in hospital for a long time as they need to get her nutrition up to par.  Emily has been bedridden all week and aside from resting during the day, only has the energy to watch DVDs.

Kath and Gary will accept visitors by invitation when Emily gets stronger.

As things are settling into a routine and little is changing from day to day, this blog will not necessarily be updated on a daily basis.  Please feel confident that if there is any news or developments this site will be updated.  The family is really appreciative of not having to relay this information personally as it is not easy news to convey and takes an emotional toll when repeated several times.

Vanessa and Leona

“Emily has 43 Beads of Courage already…what a trooper!” Katherine text through this morning.  These Beads of Courage are colourful beads that visually represent the many challenges overcome along the treatment journey.  

Gary sounded really relieved that when he first saw Emily this morning she wasn’t in pain, as they had managed it well over night

Today Emily was put under general anesthetic again, this time for a short period for her stent to be repositioned.  During this time, Kath was able to get home for a couple of hours while Gary stayed at the hospital.  Emily was able to have her special pillow and blanket with her on the way to theatre and asked for them when she woke up in recovery.

Emily is coping well with yesterday’s chemo.  She was given Part 2 today.  Over the next few days Emily will be monitored by the medical team and they will be focusing on weight gain.

Katherine said tonight that Emily is flat.  They are looking forward to seeing her personality return as she is just exhausted at the moment.  They have had a barrage of medical professionals throughout the day and were pleased with their decision to have no visitors.

Gary and Kath were visited by a representative from the Child Cancer Foundation.  Emily was given a mink fairy blanket and a goody bag and Kath and Gary received petrol and grocery vouchers.

A number of people have offered help by way of financial assistance.  A bank account has been set up for those of you wanting to contribute in this way.  If you would like details please email via the ‘Contact Me’ at the right hand side of this blog.  Kath and Gary are so appreciative of the petrol vouchers and meals they have received so far.  The support has been overwhelming.

Vanessa and Leona

We have just spoken to Katherine and Emily has been sleeping for the past 2 hours.  She has been given some short acting morphine and they are starting slow  release morphine to keep her comfortable and to allow her to have a restful night.  Emily is getting 100% of her nutritional needs through a feed, any eating she does is considered a bonus.

Today Emily began chemotherapy.  Chemo interferes with the growth of cancer cells.  Since the growth of normal cells are also affected some of the side effects may include nausea and vomiting, loss of appetite and hair loss.  Emily’s treatment will occur over 100 days with each session being spaced 10 days apart.  The goal is to shrink the tumour and hopefully relieve the pain in her bones.

Kath and Gary wanted us to especially thank everybody for the cards, comments and text messages.  Even though they are unable to reply at the moment they acknowledge the support these are providing.

Jack and Charlotte spent time in CHOC today and the family had some precious time together.  They are currently being well cared for by their 2 grandmothers.  We think people will appreciate Jack’s fine artwork above – of particular note, the family resemblance and Charlotte’s ears!

Kath and Gary have met some lovely families on the ward in similar situations and have found it invaluable talking to them.

Vanessa and Leona

PS Thanks for all the encouragement and support we have received in relation to this blog.

Yesterday Emily was really happy to see Jack and Charlotte.  Jack proudly told the nurse aide, “That’s my sister Emily, she growls at me when I go in her room”.  Jack proceeded to make himself at home in CHOC (Child cancer ward) and was seen lounging back in front of the TV within minutes of arriving!

To supplement what she is eating, Emily is also being fed via a nasogastric tube.   This was inserted on Friday night.  Yesterday evening Emily was given a blood transfusion to increase her iron levels.  She perked up considerably after this (as shown in the pictures with Jack and Charlotte).

Today Emily underwent a general anesthetic to enable further testing.  This procedure took four hours and included a biopsy of the tumour.  She also had a stent put into her ureter (tube in her kidney where urine goes to bladder), this is to take pressure off the kidney.  Bone marrow was also taken from the hip bone for analysis.

Emily has had a Hickman line inserted, this is an intravenous catheter to be used for the administration of medications, as well as for the withdrawal of blood for analysis.  This means that, moving forward, Emily will not need to be poked and prodded in the same way.

Gary said everything went well today and that Emily woke up straight away and is feeling “groggy and crabby”.  Katherine feels a sense of relief at how well the pain is being controlled.  Kath and Gary managed to get out together today – they went to Riccarton Mall for sushi and Kath enjoyed McDonald’s for lunch!

There are no results as yet from today’s testing but they are expected by the end of the week.  A treatment plan will follow.

Kath was overwhelmed when we read every email of support to her today.  Please comment on this site as we will be relaying every message.  Gary spoke with his boss today who has said to take any time he needs, and if required, he will personally fly down to do Gary’s job.

Understandably, things are pretty overwhelming at the moment and Emily is responding best to one on one contact.  Until a treatment plan is in place, Kath and Gary have requested minimal visitors.  Keep an eye on the blog and we will let you know when this changes.

The emails and text messages have been so encouraging and are showing such tremendous support.  What a tribute this is to the Wooddin family and the impact they have on everyone’s lives.

As previously noted please contact Michelle Grant if you would like to offer help.  We are working alongside Kath as to what is required and how best your offers can be utilised.  [email protected] or 03 322 8992

Vanessa