Emily's Journey

Bead of Courage: 288

It has been a good couple of days, with the Easter Bunny visiting CHOC twice!.

Emily wont be able to go home until they are sure she can tolerate the feed through her bowel.

Vanessa & Leona

There’s not much to report today.  Emily is having a relatively good weekend in the hospital.

Leona & Vanessa

Emily enjoyed seeing Holly this evening.

Today has been a better day for Emily as the antibiotics continue to work on her infection.  Tonight she was even planning an April Fool’s prank for one of the nurses!

Leona & Vanessa

This was a present from Emily’s class.  Each leaf had a written note.  One said “I don’t know you Emily but I like you”.

Emily is still fighting the infections in her body.   The multitude of antibiotics she is on seem to have her improving slightly each day.  Her inflamed bowel is very tender so her nutritional needs are being met intravenously to give her bowel a rest.  She is on diuretics to reduce the fluid in her lungs.  It will be days before Emily is well enough for Round 8 of chemo.

Leona & Vanessa

Emily has an infection in her large intestines called typhlitis.  This infection affects immunocompromised patients, such as those undergoing chemotherapy.  Emily has been given antiobiotics specific to treating this type of infection but they will take a while to kick in.  It is likely to be several days for this to be cleared and before Em can have her next round of chemo.

Vanessa & Leona

Emily is still spiking temperatures and is on a multitude of IV antibiotics.  She is generally miserable and still not well enough for chemo.

Leona & Vanessa

Text from Kath this morning, “Em is really unwell today and having trouble breathing.  Has requested no visitors at all.  Will update you all soon.  No major panic so don’t worry”.

Vanessa & Leona

Emily slept for most of the day today.  Her chemo has been delayed as she is not well enough, it will commence when her temperature is down and the infection clears.

Leona & Vanessa

This picture was taken on the weekend.  Jaymee (cousin) did his weetbix triathlon the Sunday before last (his 7th birthday) and a few months ago he said if he won a medal he would give it to Em to help her get better.  True to his word that’s exactly what he did!  Aunty Chris said, “I felt very emotional watching the two of them giving and taking in their own wee world as it was all done in the kindness and light of two little ones that I love more than words can say . . I hope the medal works eh!”

Emily has had an uneventful day in hospital.

Vanessa & Leona

Unfortunately Emily is back in hospital tonight, after having only one night at home.  Kath is gutted, as she was looking forward to spending some time at home with her family – not much to ask  :(

Vanessa & Leona

This is a picture taken a few days ago of Emily and her cousin Keanan.

Emily has had an awesome day today and enjoyed a visit from Sadie.

While chemo is every 10 days things have been fairly routine.  Whilst we have become somewhat used to the routine, we are psyching up for the next phase of treatment.   The next phase will be dependent on the results after round 8 of chemo (the next round).  We are keeping the blog updated with as much information as possible, so you can feel confident that if you are reading this then you are as up to date as we are!

Vanessa & Leona

Blood transfusion + Subway (normal food) + no temperature = happy ‘normal’ Emily

Vanessa & Leona

This is the photo we promised would appear after Emily’s visit from the Crusaders.

As suspected, Emily is back in hospital having IV antibiotics due to her high temperature.

Leona & Vanessa

Emily has had a good day today.  She enjoyed having a friend over to play as well as a visit from the teacher aide from school with her wee puppy.

This evening Emily said, “Mum there is so much fun stuff to do in my room that I just can’t decide what to do!”

Emily’s temperature was quite high tonight and Kath said, “Em desperately tried to convince me that the thermometer was broken… it’s not”.  Kath and Gary are hoping her temperature stabilises so that they can remain at home.

Leona & Vanessa

Emily eating subway yesterday afternoon after finishing chemo.

Emily has had a good day today.  Tonight she has been enjoying sitting in her bed at home watching ‘Up’ and eating popcorn.

Beads of Courage: 201

Leona & Vanessa

Emily enjoyed a visit from the Booth family this morning.  Within 15 minutes of this photo being taken the chemo that began at 9am had kicked in and she was miserable and vomiting for the rest of the day.  This is Emily’s 7th round of chemo.

Leona and Vanessa

Emily is likely to be in hospital now until Tuesday.  She had her nephrostomy dressing changed today which she finds quite traumatic because it hurts.

Emily and Kath are in a really good room (pictured above).  Kath says the bed is really comfy.  Tomorrow Katherine will be 25 weeks along in her pregnancy.

Today they have been playing board games.  “Emily has been kicking my butt at Scattergories” says Kath (she would do the Law family proud we think).

Vanessa and Leona.

Emily is back in hospital tonight.  She had a temperature this morning and started IV antibiotics when she got to hospital.  Her temperature has to be within the normal range for 48 hours before she can go home.  She has also had a blood transfusion.

It is great that Em was able to have 5 nights at home.  Having chemo every 10 days means that her immunity is constantly suppressed.  Kath said, “the fact that she gets to go home at all is fantastic.  People on similar treatment protocols are often hospitalised for the entire time”.

Leona and Vanessa

This is a picture of Emily and her friend Josh.

Emily has had a happy day at home.   Yesterday she spent all day in hospital getting platelets.

Emily had her tutor come today.  She has been loaned a laptop to carry out some of her school work and gets 2 hours per week of tutoring.

It has been over 6 weeks since Emily has had a bath or shower.  This is because she is unable to get her Hickman line or nephrostomy tube wet.  Kath has been having to give Em sponge baths.  One of Emily’s hospital  friends drew her a picture of her in a bath full of bubbles with the caption, “We can’t have a bath, but dreams are free”.

Gary has been flat out at work.

Vanessa & Leona

Here are Jack and Charlotte with their sibling beads.

Emily has had a lovely day today.  They spent the day together as a family.

Leona and Vanessa

Gary and Kath would like to thank their family in Liverpool for the parcel that arrived for Emily.  Thank you also to everyone who has encouraged Emily through this time with presents, support, thoughts, prayers etc.

Emily has had a great day today.  Kath and Gary cannot believe the unpredictability of the effects of Emily’s illness and treatments, where she can go from being very unwell one day to happy and settled the next.  This is making it very difficult to plan anything more than a few hours ahead.  They are enjoying visitors, however plans can change very quickly and they appreciate everyone’s flexibility and understanding when they have to alter/cancel arrangements.

Leona and Vanessa

Emily was really sick with the chemo yesterday but has had a better day today.  It has been helpful having Nana Sue down to look after Jack and Charlotte, allowing Kath and Gary to spend time with Emily.

Emily is looking forward to getting home and spending some time with her brother and sister.  She doesn’t want to have cancer anymore, and wants to be ‘normal’.

Vanessa and Leona

Beads of Courage 169

Emily started her 6th round of chemo tonight.  Yesterday’s antibiotics have cleared her infection and she has been feeling a bit better today.

This morning at 5am, while vomiting, Emily’s naso-gastric tube came out.  She received a special ‘challenge’ bead because she managed to get it back in by herself.  What a legend!

Emily had a photo today with some of the Crusaders (photo to follow).  When asked what sport they played her response was “soccer?”.  She’s a true Wooddin.  Emily was particularly pleased when she heard how jealous cousin Keanan was.

They are likely to be in hospital for the next couple of nights.

Emily’s latest joke “What’s a monkey’s most favourite but scary food? ……   BOO nana’s!”

Vanessa and Leona

Emily  had a temperature this morning and has been on IV antibiotics in the hospital today.  Kath said, “Em has slept a lot today and been generally miserable”.  They are staying in hospital tonight.

Jack and Charlotte have now got their ‘sibling beads’.  They get one bead for each month that Emily is on treatment.  Their beads are animals that represent their qualities and personality traits.  Jack has a fish and a dolphin and Charlotte has a cat and a rabbit.

Leona and Vanessa

Emily had a good day today.

Yesterday Emily went into the hospital and had a platelet transfusion.

There isn’t anything else to report today.

Leona and Vanessa

Here is a picture of Emily and me this evening (with Oscar the dog)

Emily has had a reasonable few days at home with a couple of outings.  On Saturday the family went to the Rolleston School Fair for half an hour.   They also took a trip to The Warehouse today to buy some storage containers for all the wonderful gifts she has received.  Jack and Charlotte have been sick but amazingly, touch wood, Emily hasn’t caught anything.

Emily has no appetite and is struggling with her naso-gastric feeds in terms of tolerating the volume.  She has also been vomiting more than usual after her last round of chemo but hasn’t been complaining about it.  She is very tired but happy in herself.

Vanessa (and Leona)

As you will have read in previous blogs, the cancer treatment has caused Emily to become neutropenic.  This means her body has very little or no ability to fight infection.

Infections in people who have cancer, or are getting cancer treatment, can be more serious than those in other people. They can also be harder to treat.  Of particular concern are the common childhood illnesses chicken pox and measles.  It is vitally important for Emily to avoid the risk of contracting either of these – this means that if you have had any contact at all with chicken pox you must stay away.  Even things that appear minor such as colds and flu-like illnesses are a risk.  Because Emily’s immunity is compromised, she will pick up illnesses quickly and will need medical intervention to fight them.

Infection is one of the most common life-threatening complications of cancer.

It is so, so important that if you are visiting the family and there is any doubt of you being less that 100% that you please stay away until you have been feeling well for 24 hours.  If in doubt, please check with Kath or Gary prior to visiting.

Leona and Vanessa

Beads of Courage – 145

Today Emily had a platelet transfusion, chemo and then a blood transfusion before heading back home.

She has been in bed all day feeling grotty.  Kath said that this is typical of the day following chemo.

Leona and Vanessa

Today Emily had surgery to have her nephrostomy tube replaced.    This was the fifth time since diagnosis that she has been put under general anesthetic.   Emily also began her fifth round of chemo today.

Vanessa and Leona

Here is a picture of Emily with her friend Mel (the friend she shared a room with one night in CHOC).  Emily is enjoying some baking.

The Wooddins have had a fantastic weekend at home.

Today they went on an outing together for the first time in weeks.  Emily wanted to spend some of her money at The Warehouse buying some girly DVD’s and a toy.  Jack and Charlotte were also rewarded for coping so well with all the changes effecting their family.  Later Emily said to Kath, “It was really nice at The Warehouse today because a girl looked at me and didn’t even look at me funny, she just smiled”.

Last night they enjoyed celebrating cousin Keanan’s birthday. While playing out on the street, his neighbours asked about her tubes.  Emily confidently explained what they are for before moving on to the more important topic of when their birthdays are.

Kath and Gary want to say thank you to everybody for the meals. They are especially valuable at this time given that they are incredibly busy while based at home with day visits to the hospital.  It is taking a lot of pressure off when they’re not having to think about what is for dinner.

While Emily is in good spirits, they are cherishing the fun times they are getting together. As they move forward with treatment they are uncertain of how Emily will react.  For this reason, they are making the most of every ‘well’ moment.

Leona and Vanessa