Emily's Journey

What a day!  In the words of Gary, “It’s been an eventful day for the Wooddin’s in Hotel Hagley!”

Emily has been feeling miserable with the mucositis causing more pain and another temperature today.  Another antibiotic has been added and her morphine has been increased to keep her comfortable throughout this time.  Gary is in hospital with Emily for the night tonight.

On another note, Charlotte had an accident today – she tripped up some stairs and managed to split her lip open on the wooden bannister.  Kath and I took her to after hours where she was seen by a doctor who explained that her lip would need to be sutured and, because of the location of the injury, it had to be done by a plastic surgeon.  So it was back to the hospital with Charlotte and, after several hours of patiently waiting in A & E, she received 3 stitches to her lower lip.  It only took about 20 minutes with some gas and a local anesthetic to put the dissolving stitches in.  Charlotte was a real trooper, didn’t grizzle or moan and remained quite happy throughout the evening.   It seems the Wooddin’s ‘breed them tough’! Charlotte could have been taken home tonight, however because it was so late it was decided that it was easier for them to stay in until the morning, so Kath is in the hospital with Charlotte tonight.

The picture above shows Charlotte (and her new teddy) enjoying her first McDonald’s meal at midnight on a Saturday night.  This went down extra well as she hadn’t eaten since 1:30pm.

Jack is spending the night at home with Grandma Sherilyn.

Kath is hoping for a less eventful day tomorrow and perhaps even a night in her own bed!

Leona

Today has been a quiet day in hospital for Emily and Kath.  Em has been feeling miserable from the mucositis and is now on continuous morphine to combat the pain she has been experiencing. She has also started on an antibiotic as she spiked a temperature this evening.

Emily said she is feeling settled tonight.

Leona

Emily has been quite flat today.

Evidence of mucositis is beginning to show.  Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract and is an inevitable side effect of high dose chemotherapy.

Tonight Emily’s throat is extremely sore, making talking and swallowing difficult.  Tomorrow Emily will be put back on TPN feeding, this means that her nutritional needs will be met intravenously, saving her the pain associated with chewing and swallowing.  Emily’s white blood cell count is zero so she is very susceptible to infections at the moment.  She has also had nausea and vomiting over the last few days.

The side effects that are beginning to occur will continue until her stem cells begin to graft into her bone marrow.

Kath said that she is impressed with the way the medical team is managing the side effects for Emily.

Leona

There is not much news from the hospital today.  Emily has had some nausea and is not interested in eating very much at the moment. 

Gary is holding down the fort at home and is turning into a domestic whizz – folding the washing and doing the groceries as well as keeping Jack and Charlotte in their daily routine.

Leona

Today was a big day!

Today Emily had her stem cells re-infused. This involved slowly syringing 8 x 25ml bags of her stem cells into her central line.

Whilst the procedure itself is painless, the substance that preserved the stem cells while they were frozen caused major stomach cramps, ear pain and arm pain. Emily was very upset and required morphine throughout the one and a half hour long procedure.

She was extremely brave as usual. Now they wait for the stem cells to engraft into her bone marrow enabling her to recover from the effects of the high dose chemo.

It’s now only three and a half weeks until the newest Wooddin is due! A nice focus for Emily to help get her through the next few weeks.

Leona

Today Emily had her infusion of Melphalan, a super high dose chemo.  Emily began vomiting within two hours of the infusion but brightened up as the day went on.  The effects of the chemo from the past week are starting to show and will get worse before they get better.

Emily’s stem cells will be infused on Friday to rescue her body from today’s chemo.  It will then be a matter of waiting for the stem cells to repopulate Emily’s bone marrow and produce white blood cells to fight infections.  This could take three weeks or so.

The Wooddins are taking each day as it comes and ask for no visitors until further notice.

Leona & Vanessa

No news today.  Em continues to be in isolation as she will be for the entirety of the stem cell procedure.  Gary is with Emily in hospital tonight.

Vanessa & Leona

Em’s spirits were high today and she loved spending time with her cousins.  Above is a picture of Emily with Jake.

Vanessa & Leona

Emily’s chemo started at midnight last night.  She has to take sixteen chemo tablets every 6 hours for the next few days.  Emily is in complete isolation and is not very happy about staying in her room.

Leona & Vanessa

Emily has had a great 2 weeks at home.  She has enjoyed spending some time with her family and has had ‘play-dates’ with her close friends.  One highlight was being able to go on the children’s TV show What Now with her cousin Jaymee.

With Emily continuing treatment we are organising meals etc to assist during the next several weeks.  If you would like to help in any way please contact Michelle on [email protected] or (03) 3228992.

Vanessa & Leona

Emily is starting ‘high dose chemotherapy’ on Thursday 27th May.    They will be administering the chemo over the course of approximately a week and then the stem cells will be infused.  The stem cells will then have to graft into her bone marrow which takes approximately 3 weeks. Emily should recover from these procedures by the end of June. 

She will be having tests next week on her heart, chest, kidneys etc in preparation.  

We will not be updating the blog over the next few weeks, until this next round of treatment starts.  Kath and Gary will be giving Emily the best 2 weeks possible with lots of  ‘normality and fun times’.

Vanessa & Leona

There is still no news as to when Emily’s next treatment will take place.  In the meantime, she has been enjoying some happy time at home feeling great!

Leona & Vanessa

Emily has over 320 Beads of Courage.

She has had a nice weekend at home.

Vanessa & Leona.

Emily went to school for a few hours this morning.  She joined her class in a performance of a song called ‘Bad Hair Day’ in the school assembly.  We are laughing at the irony – perhaps it would have been more fitting to be called ‘No Hair Day’.

We are expecting to find out on Monday what is happening.  Rob (oncologist) will be back from holiday and make the final decision as to whether to operate on the tumour or do the high dose chemo first.

Vanessa & Leona

Look at this cute, cheeky, happy girl!  Emily was in hospital today for a few minor treatments in preparation for what is to come.  Still no news on the timing of the next treatment.

Below is a picture of Emily and her friend Melanie enjoying some playtime together in CHOC.

Vanessa & Leona

The Wooddins had a quality weekend at home together which included an outing to Orana Park yesterday.  When a lady walked past them with a llama, Jack said, “Look, it’s a sheep horse!”

Emily was able to spend some time at school today.  She was excited to wear her school uniform.

Kath and Gary are awaiting word from the hospital as to the timing of Emily’s next procedure.

Leona & Vanessa

Unfortunately they didn’t get enough stem cells yesterday so the procedure was repeated this afternoon.  Emily was told at the very last minute to avoid anxiety.   Gary has been with Emily this afternoon and is staying with her tonight.

Vanessa & Leona.

Today Emily had her stem cell collection.  She was miserable.  Fingers crossed they’ve got enough.  If not then it will be repeated tomorrow (see explanation of procedure on previous entry).  This is a picture of Emily during the procedure this afternoon.

Vanessa & Leona

The following information outlines Emily’s upcoming treatment.  As mentioned in previous blogs, this treatment will include high dose chemotherapy and a stem cell transplant.

Emily will have an autologous stem cell transplant.  This means Emily’s own stem cells will be used.  They will be collected prior to the high dose chemo and then returned to her afterwards.  This approach is used to help reduce the chances of her cancer coming back (relapsing) in the future.

High-dose chemotherapy aims to destroy disease.  As an unwanted effect, it may also destroy the precious population of stem cells, which then need to be replaced.  In short, a stem cell transplant is necessary to ensure that the bone marrow is repopulated with healthy blood stem cells following high-dose treatment.  The new blood stem cells will rebuild the body’s blood and immune systems.  The recovery of these systems is vital for survival.

Stem cells are collected from the blood stream by passing all of the blood through a special machine called a blood separator or apheresis machine.  The blood is drawn from the line that was placed in Emily’s femoral vein. The machine spins the blood very quickly and removes the part that contains the blood stem cells. This is a continuous process. While the stem cells are being removed the rest of her blood is being returned to her via another port.

A peripheral blood stem cell collection usually takes 3 – 4 hours.

The stem cells will be frozen (cryopreserved) and stored until they are infused on the day of the transplant.

The day that the stem cells are transplanted is often considered as the most crucial day however, it is important to realise that the processes involved in a stem cell transplant are often long and complex. In reality a transplant involves a lot of preparation and a lot of aftercare.

Before Emily receives her transplant she will have a few days of what is known as conditioning therapy (high dose chemo). Conditioning therapy is used to help destroy any leftover cancer cells in the body and make space in the bone marrow for the new stem cells.

The transplant itself is a relatively straightforward affair. The stem cells are infused intravenously, rather like a pink-coloured blood transfusion. This can take between 30 minutes and four hours, depending on the volume of cells being infused.

After they are infused, the stem cells travel through the blood stream and find their way to the bone marrow. Here they set up home and begin to repopulate the bone marrow with families of immature white cells, platelets and red cells. This process is known as engraftment and it usually takes anywhere between 10 and 21 days.

Emily will be monitored very carefully in the early days following her transplant. This involves being examined by the doctor every day and having regular temperature, pulse and blood pressure measurements taken by the nurses. Each day, blood samples are taken from her central line to check blood counts and to monitor kidney and liver function.

Once the stem cells have engrafted, Emily’s immune system will take some time to recover to a normal level of functioning.  During this time there is still a high risk of infection.

We will continue to update the blog regularly to keep you informed of how Emily is progressing.

Leona & Vanessa

The Wooddins have had a lovely week at home together.

Emily is hospital having a blood transfusion today.  She is having a general anesthetic tomorrow to insert a line in her femoral artery in preparation for taking her stem cells when they are at an optimal level.

Leona & Vanessa

Emily spent two and a half hours at school today. She loved doing the school work and socialising with her friends again. Kath is trying to give Emily as many ‘normal’ experiences as possible before the dreaded ‘high dose’ chemotherapy that is ahead of her in the coming weeks.  The high dose therapy will mean she is hospital (bedridden) for several weeks. This will be very traumatic for the whole family, but Emily is strong and will get through it!  Again, specific info regarding the upcoming treatments will be explained closer to the time.

Kath says, “Thanks to everyone again for all your support”.

Vanessa & Leona

Emily went to school to visit her class for half an hour today.  The children were excited to see her and she very candidly and confidently told everyone what is happening in her world at the moment.

This evening Emily went into hospital for her first round of injections in preparation for stem cell collection.  Kath will continue to give her these each night this week.

Leona and Vanessa

Emily has coped well with her 8th round of chemo (3 days worth). She is home now but will be having daily injections to stimulate the growth of stem cells which will be harvested when they are at an optimal level. We will explain the stem cell collection procedure closer to collection time.

Emily will also be having regular blood tests etc at the hospital during the week. Kath is hoping that this week will be uneventful and that Emily doesn’t get a temperature!

Vanessa & Leona

Emily is in hospital tonight having her 8th round of chemo.  No other news.

Vanessa & Leona

Yesterday Emily had a general anaesthetic to have bone marrow taken for testing.  Today the doctor rang and said there was zero evidence of neuroblastoma in the bone marrow.  More FANTASTIC news!  Yet more reason to continue celebrating today.

Kath and Gary would like to say thank you again to everyone for the support they have received by way of meals, gardening, lawn mowing etc.  It has freed them up to put more of their energy into reassuring Emily and keeping her spirits up.  They cannot imagine how they can begin to express their thanks adequately.  THANK YOU

Vanessa & Leona

Today Kath and Gary received pleasing results from the CT scan Emily had on Friday.  As mentioned previously, Emily had a dye injected before her scan to highlight the neuroblastoma cancer cells in her body.  The scan from Friday revealed a significant and amazing reduction in the amount of cancer remaining in Emily’s bones.  Kath was able to view the scan taken at diagnosis (9 January) and the scan taken last Friday (9 April).  The change in the pictures was staggering and made Kath and her family so happy.  Emily also viewed the scans and was so pleased to have “way less cancer“.  The oncologist is also very pleased and said again it was the “best possible outcome for this stage of treatment“.  The CT scan from last Friday was basically clear with potentially a small amount left on the skull (see the picture).  The picture below is somewhat amateur in nature, but a representation of what Kath drew for me, with great joy, to explain the results.  It does not include the tumor which originally was the size of a peach but has also shrunk.

Although the special dye highlights the cancer cells, there will still be cells that will have been missed.  Meaning there are still more intensive treatments to be had.  These treatments will involve high dose chemotherapy, a stem cell rescue, surgery on the tumor, to name a few (not in any particular order).  We will continue to keep this blog updated with information as soon as it becomes available.

We basically get one shot at eradicating all the cancer from Emily’s body as unfortunately at this stage there are no treatments for relapse.  There is a 70% chance of relapse – lets hope Em is one of the 30% that kicks neuroblastoma’s butt.

She is doing so well, please keep encouraging her in her brave endeavours!  Please celebrate, with us, today’s fabulous news but remember that this journey is far from over.

Vanessa & Leona

Another good day at home, eating ice-cream and hanging out with the neighbours.  Normal school holiday type behaviour.  Lots of colouring-in today.

Vanessa & Leona

Emily is back home after 17 hectic nights in hospital recovering from the infection she had in her bowel.  They are very happy to be home!

Yesterday Emily had a staging scan to assess the size of the tumor.  The results will indicate whether the tumor is small enough to be removed or whether further chemo is required beforehand.  Emily managed to keep still without any sedation for an hour and a half during the scan – what a legend!  The day before the scan, Emily had to have a radioactive dye injected to highlight the neuroblastoma cells in her body.  She was anxious for days prior to this but coped very well.  We will update the blog with any results in due course.

Leona & Vanessa

Gary is working away quietly in the background threading tiny beads onto a  bracelet.  He is a man of many talents!  I should also mention that he managed to burn the popcorn so terribly that it stank out the entire CHOC ward as well as the children’s ward next door!  It was so burnt it almost caught fire!

Vanessa & Leona

Emily is still being weaned off her intravenous feeds.  They are slowly integrating food back into her diet, just gradually so her stomach can handle it.  Gary is spending tonight in hospital with Em.

Emily saw an ad on TV today about a Mothers Day competition which you have to write in and say why you have a great mum.  Emily said “I would say my mum’s the best because she takes really good care of me”.

Vanessa & Leona