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HOWES FAMILY BLOG


LOVING LIFE TOGETHER

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RAMBLINGS AND REFLECTIONS

August 18, 2016 By Jerusha 3 Comments

I realise this post is more for me than anyone else so if I lose you along the
way I understand!

I know it’s been quite some time since anyone has made a post on our blog. We
have talked about it for some time. Felt we should for some time. We’ve wanted
to keep everyone informed and we’ve wanted to tell everyone how much their love
and support has meant to us over the past three years. It just has never been
the right time for me to say where we are at.

A couple of months ago we celebrated two years cancer free! This was a fun and
great milestone. We made it a family celebration so Ethan himself wasn’t the
highlight. His journey has affected Blaise and Vienna’s journey and so we wanted
it to be a fun special day for all of us. My mother in law made cinnamon buns
and we celebrated with our Adelaide family.



One never knows what to expect but the last two years haven’t really been what
we would have expected. Ethan has been very anti us blogging since he got
better. He doesn’t really want everyone knowing the ins and outs of what he has
been going through. So I’m not going to go into great detail here. I can tell
you his health continues to improve. We have regular ct scans, ultrasounds,
x-rays, blood tests, urine tests, heart ecco and ECGs. All of his results have
been great. The half a kidney he has is regenerating and is almost the size of a
full kidney! The human body is amazing. Ethan still suffers some side effects
from all of the medication that he was on. This has affected his self esteem and
how he views the world. We experience a roller coaster of emotions and moods
constantly but are working through things as best we can.

The whole time Ethan went through treatment we tried to be positive and upbeat.
We didn’t really talk about the ‘what if’s ‘ as we were so determined to get the
outcome that we wanted. Then we moved interstate which was a big thing. I feel
like I lived on adrenaline for over a year and then that kind of came crashing
down last year. Not many people openly talk about depression and what is really
going on behind the facade. I don’t want to dwell on it but I do want to be
honest for others going through similar trials and our fellow childhood cancer
friends. I don’t want sympathy and I’m not asking for any help. In fact I’d be
happier for no comments on it! I just want to say that last year was really hard
for me. Harder than the year we went through treatment. Because ‘IT’ is over
everyone thinks you are fine and you have moved on. However when ‘IT’ was over
was the first time I was able to stop and breathe. Then I would think about what
we had been through and the emotions would come. It was hard to get out of bed
most days. It was hard to do anything most days. The fatigue was extreme. Doing
normal housework would leave me feeling like I had run a marathon. The stress of
the year before had changed all my hormones, eating habits, adrenaline etc. That
has an impact on the body. It was hard dealing with this in a new city where I
had to make new friends. However the new friends I have made here in Adelaide
are amazing.

So no one really heard from me last year at all. Sorry. This year I’m feeling
lots better. It’s just taking time to piece everything back together and get on
top of the house and a home business etc. A couple of months ago I started
counselling at the Childhood Cancer Association. They are amazing. For the first
time I have been talking about what we went through. Trying to get past guilt
having him diagnosed so late in the piece. So many emotions.  So many thoughts.
I’m feeling so much better now. I’m not as tired and I’ve been out hiking and
walking with friends which has become my lifeline.

I’ve learned so much yet part of me wonders if I learned enough from the
experience. I think there is no right or wrong way to grieve. There is no right
or wrong way to feel. When you experience a trauma you do what you have to do to
survive. Everyone will react differently and that is ok. I think the best thing
we can do for loved ones in need is to support them with love and understanding
in the way that they choose to cope and deal with their trial.

I chose to write tonight as it has become a reflective time of year for me.
Tomorrow is my birthday. Don’t worry, I’m not reflecting on getting old. As well
as my birthday tomorrow is the 3 year anniversary from when Ethan got his full
diagnosis of Stage 5 Bilateral Nephroblastoma. On the 16th of August our GP sent
Ethan for an ultra sound which found one large tumour in his left kidney. It was
on my birthday (we had to wait to get through the weekend at the hospital) that
Ethan had a full CT scan, revealing tumours in both kidneys and in his lungs. It
was a really trying day but looking back the events that unfolded that day
shaped how we dealt with life for the year to come. Ethan was meant to have his
scan first thing in the morning. He had to be anesthetised just in case they
decided to go straight into a procedure, take a biopsy etc. Ethan had been
fasting since he finished his dinner at 5:30 pm the night before. Every hour a
nurse would come and tell us that the scan had been delayed again. Ethan ended
up fasting over 24 hours as a sick 5 year old. Keeping him going through the day
was hard. At one point I remember him crying and saying “you say you love me but
if you love me you would give me food.”

Eventually Ethan went in for the scan. His full diagnosis was a huge blow. Of
course it’s not what you can ever expect. After our meeting with our oncologist
and surgeon I remember going back to Ethan’s room and he was still asleep from
the anesthetic. I cried. I really cried. Only for about 5 minutes. I then wiped
my tears and got ready for when Ethan woke up. I wanted to fall apart but felt
like I needed to hold myself together for Ethan. Then I thought ‘who cares if
it’s stage 5 we are still going to kick this thing.’

As the scan was meant to be in the morning my family had arranged a birthday
celebration for me at the hospital. All of my siblings with their families, one
of my cousins and their family and an aunty all came with food to share.
Everyone was waiting downstairs for us and Ethan was still out of it. Eventually
Ethan woke up and had something to eat and then I went downstairs to see my
family. Everyone was so kind and it really meant a lot to have my family all
there. We were just about to light the candles when Ethan came down the ramp. He
saw us from a distance and yelled out “wait for me!” As he approached us
everyone started cheering for him as if he just won a marathon. His whole face
lit up and he flexed his muscles and grinned. He then plonked himself on my lap
and managed to blow out the candles and cut the cake. He talked with everyone
and loved seeing his cousins. Then some nurse came and took him back as he
wasn’t meant to be up and about after the anaesthetic. So the cousins took in
turns seeing him up in his room.

My family had all pitched in and bought me a Pandora bracelet with 3 charms for
my birthday. One of the charms has the words ‘family’ and ‘love’ on it. It was
more than a bracelet. They were offering their full love and support for what
lay ahead.

Each year I think back on that birthday. I vividly remember Ethan’s face and
arms flexed up like a boxer as he walked towards the family. I remember how
Ethan set himself up as the hero. I remember Blaise and Vienna sitting alongside
us but they were happy to let their brother have the attention. I remember
feeling love and support. I remember the despair and then the determination to
be positive and strong. When I think of the year we spent on treatment and all
of its ups and downs these things became a constant theme. We always had love
and support from family and friends. I can’t express just how much of this we
got and how much it still means. We had it from all over the globe. We were able
to stay positive and focused on the end goal despite the hard times along the
way. Ethan was a true champion the whole time as were his incredibly
understanding and supportive siblings Vienna and Blaise.

So despite that birthday being a tough one what I remember most is all the love
and support that was given then and sustained over the years.

This was more than I thought I’d write! However it is what I wanted to say. I
actually wanted to write it on my birthday last year but just never found the
energy to do it. Now that I’ve made the leap to writing again hopefully I’ll be
back on here soon with some fun posts about the kids and our new life in
Adelaide.

 

Filed Under: Uncategorized


THE LAST CHEMO, PLATELETS & TESTS

July 28, 2014 By Jerusha 15 Comments

I know it’s been a few months now but I thought I would write about Ethan’s last
chemo for those of you who don’t live close and still want to know how it all
ended!

Of course everyone was excited when the day arrived for Ethan’s last chemo. I
gave Blaise the day off school so he could come and keep Ethan company. Vienna
came too but she opted to go to the hospital child care centre as opposed to
stick with us in the oncology clinic. We ended up having a long wait and so we
got lunch from the hospital cafe just as the chemo started (as opposed to our
planned outing afterwards) which was definitely a good thing. For some reason
this last round of chemo really hit him hard. He was feeling sick before we even
left the hospital (it normally took an hour or two to really set in), he threw
up a lot more over the coming days and it took him quite a while to bounce back.

Last Chemo! Blaise, Ethan and Vienna often choose to sit right next to each
other and often share one seat. I love that they are close.

 

A week after that chemo we went in for his regular weekly blood test. Once again
his platelets (blood cells whose funtion is to stop bleeding) hit rock bottom.
He was diagnosed with a rare liver disease (caused by the chemo) where his body
destroyed platelets instead of producing them. We were told it was no big deal
in the long run as the liver would heal itself and it showed up at the end of
chemo (he would have had more trouble if he still had weeks or months left to
go). What it meant was we ended up having to go back to the hospital every 2nd
day for a platelet transfusion & if he had a bleeding nose we had to treat it
like an emergency and head straight for the hospital (when he did have bleeding
noses they lasted for over an hour as without platelets his body didn’t have the
ability to stop the bleeding). Each time we went we had a blood test to see his
levels. After a transfusion you would expect the levels to go up by at least 100
however Ethan’s were going up by 2. So we went every 2nd day, including Anzac
Day, Easter Saturday and the Monday public holiday until eventually the body
healed itself and the platelts sky rocketed again. We were very happy when this
happened! We then got the approval to go visit my sister in Newcastle for a
couple of days – we just had to report to hospital up there if he had any
bleeding which he didn’t. It was so good to have a little escape after so many
hospital trips.

This was Ethan’s last platelet transfusion when he was looking stronger and way
less bruised!

3 weeks after his last chemo he had his important CT scan. Although he had lots
of tests done this was the big one which would show if the cancer was all gone
or not. Of course we were exstatic to have the official all clear. I can’t
really put words to how it felt for it to be over but as you can imagine we were
over joyed.

The day of Ethan’s scan he met the stars of the Footy Show! They were doing a
segment on The Starlight Room. Ethan managed to be included in the show.

On the 22nd of May Ethan had his central line taken out. This was the thing that
meant the most to Ethan. Although wen he found out he had to have a canular
every 3 months for his CT scans he asked if he could keep it in for the next 5
years! Almost 9 months to the day of having his line put in he had it out again.
Of course the fasting is always the hardest thing although this time round was
definitely Ethan’s best. The anethetist came and spoke to us before the
proceedure and then asked if we had any questions. Ethan said “yes, can you
please order me a pizza?” We promised we we would when he woke up. Off we went
to the room where he climbed on the bed and was put to sleep. Once again I had
to give him a kiss and walk away trusting him into the hands of our surgeon. It
was quicker than expected and before we knew it we were sitting by his side as
he slept on after the anesthetic. He looked so peaceful and relaxed. For a long
time I couldn’t detect a single movement other than his breath. Then all of a
sudden he opened his eyes and instantly asked “Did you order my pizza?” I can’t
tell you all how much this boy makes me laugh. You aren’t meant to eat after
anesthetic. You are meant to wait and see how your body responds. Well we have
learned with Ethan that when he wakes up he is hungry. Really hungry. He ate and
ate and ate. Seriously. He ate a lot of food (half a can of pringles, a box of
shapes, a dixie cup, calamari rings, hot chips, half of my fish, brownie and
banana bread. The cafe got good business from us that night! Then he just up and
walked out the door. Just thinking about it now as I type I am a little teary as
I recall how good it felt to walk out that night knowing we were done. Sure
we’ve been back for different appointments since but the big stuff is behind us
now.

This boy loves to show off his muscles.

 

Now you see it….

 

 

Now you don’t!



Always the joker.

In a way it’s hard to imagine that it was only 9 months and in other ways that 9
months felt like a life time. I feel like everything in life was either pre –
diagnosis or during his illness. I constantly find myself saying somethign along
the lines of  “We haven’t done this since before Ethan was diagnosed.” Curing
cancer consumed every aspect of our lives. So much has changed that will never
be the same. I overheard Vienna playing doctors and nurses with her cousins.
There were no complaints of headaches, tummy aches or broken arms. Every cousin
picked a different form of cancer to be cured of. At the time I laughed but the
reality is far from funny as cancer is way too prelavent in our society.

Vienna needed to go to the doctors today and she totally freaked out and went
hysterical when I told her. I was given the inspiration to know what her concern
was and was then able to assure her she didn’t have cancer and wouldn’t be going
to hospital or having medicine that made her sick. Once I told her the GP has a
jar of lollipops she was only too happy to go. Funnily enough she had forgotten
about the lollipops once we were there and didn’t even get one!

Ethan is our miracle boy. Not a day goes by where I don’t feel complete
gratitude for his healing. I would be lying if I said I didn’t have concerns
about side effects and what aspects of his future life will be affected by all
of the radiation and medicine. I have to keep reminding myself that he is a
miracle boy and we can fight anything that comes.

Last week Ethan had a 24 hour vomiting bug. It came so out of the blue. He
handled it brilliantly as he is a master at using the vomit bags and wiping his
mouth off etc. He doesn’t cry, complain or get upset. He is used to being sick
so he just takes it in his stride like it’s any other day. That night I
confessed to Luke that that day I had the irrational thoughts and fears that
what if this meant the cancer was coming back? Vomiting is one of the symptoms
for kidney tumours. I felt silly in my confession until Luke told  me he had had
the same thought. I have hope that one day those thoughts will leave my mind and
that we won’t live life with that fear always in the back of our minds. Now we
are celebrating life and trying to make many fun memories of good times
together. Family comes first and I try to plan our days together so that when I
put my children to bed at night they can go to sleep knowing that they were my
number one priority that day.

 

 

Filed Under: Uncategorized


ONLY 1 MORE SLEEP!

April 2, 2014 By Jerusha 4 Comments

Last night I read ‘The Chemo Chronicles’, a quarterly magazine for families of
oncology patients at Westmead Hospital. Each time I rejoice as I read the
‘Congratulations’ page which lists the names of children who have finished
treatment. Each time I shed some tears as I read through the ‘condolences’ page
listing the children who have lost their battle with cancer. Even if I don’t
recognise a name on the list it is still devastating to me. Last night I read an
article written by a parent who made the comment that the only 3 places they
ever go is the hospital, home and the shops. They said no other place exists
during this time of their life as cancer is all consuming and everything else
doesn’t matter. It probably is true for most. Fortunately for Ethan his
treatment has not been as demanding in comparison to children with different
forms of cancer. However on top of that we have tried to keep life as normal as
possible for the family, which has been important to us. There are times where I
think we could have kept things a lot simpler. However we then added a whole
heap of crazy to the mix by buying a house, selling a house and moving house. It
really has been an insanely busy and stressful period of my life! This is why
you haven’t heard from us, not because we haven’t had a lot happening to report
on. The PC is still packed away (and has been for 3 months as we de-cluttered
our home in order to help sell it) but I’ve hijacked Luke’s laptop to keep you
all updated. I think I’m about to write about a lot of things all squashed
together so please forgive me in advance.

The last time I wrote (from memory) I was talking about how much better Ethan
has been on chemo. While that is still true I kind of wrote a little too soon!
Just two days after that Ethan passed out and then slept for a good chunk of the
day after not eating for several days in a row. As he was still moving round and
doing activities we didn’t monitor his food and water intake as closely as we
should have. He got multiple ulcers in his mouth and all down his throat, the
nerve pain came back, he has lost his reflexes again as well as his spacial
awareness (he is covered in bruises) and some of the screaming came back a
little bit when he is extremely tired. So the next time he had chemo we forced
him to take the anti nausea medicine for longer than he likes and for 4-5 days
it was my full time job to try and get him to eat and drink little mouthfuls at
a time. He did better. We also stayed on top rinsing with bi-carb soda several
times a day to keep the ulcers at bay. For those who follow my facebook you
would know that Ethan had a hospital admission due to a fever. It turned out to
be his best admission yet! He got his own room and he had visitors both of which
were very exciting. The best thing that happened was he lost a tooth for the
first time at the beginning of his stay. Well this just put him on cloud nine.
Every person that walked in the door got to see his tooth and read the letter he
wrote for the tooth fairy. The tooth fairy came to the hospital and then he got
to show everyone his $2 coin. He took in his guitar and had fun making up songs.
So he survived the admission quite well. Thank you to those who came to visit.
Then he had a really bad week at home only to come back to life again after a
blood transfusion. His best friend Sam came with him to the hospital when he got
a platelet transfusion which made for a fun hospital day.



Aunty Judy, Ness and Uncle Greg came to visit which was a highlight for Ethan.

Ethan and Sam in the clinic. This was one of the best clinic days EVER! They had
so much fun together. A visit from the Starlight Captains and then the Clown
Doctors certainly helped but mostly hanging out with your best friend really is
the best.

Now having said all of the above we haven’t been worried or concerned. In fact
we have been celebrating! A few weeks ago our oncologist announced that the
chemo Ethan is due to have tomorrow is his very last one!!! Yes you read
correctly. Tomorrow Ethan is going to have his last chemotherapy session! We
couldn’t believe it. It came sooner than we expected. Just the thought of being
at the end sent us into celebrating mode. All of the illness, ulcers, bangs and
bruises have been dealt with much better as we can see the end of the tunnel.
Ethan is thrilled to bits, as is everybody else. Blaise is having the day off
school tomorrow to come to the hospital with us. We are going to go out for a
late lunch afterwards to celebrate as the chemo doesn’t hit him for a couple of
hours but I know he won’t be eating come dinner time. I can’t find the write
words to describe how I’m feeling right now (although whatever they are
‘fatigued’ should be added to the list). I feel so grateful and blessed for all
the miracles we’ve seen over the past 7 months. So many people have helped us
and blessed our lives during this time and I also feel deep gratitude for those
people. To be at the end of the chemo is an amazing feat and I’m so proud of
Ethan for being so brave and strong during this battle which he has conquered.

I know we can’t get too far ahead of ourselves. The journey isn’t completely
over. Over the coming weeks Ethan has to have a whole series of tests including
a CT scan, MRI, ultrasound, heart ecco, eye tests, muscle tests, weekly blood
tests etc. The purpose is two fold. Firstly to be 100% certain that all traces
of cancer have left his body. Then all the results will form a base for the
testing he will have over the next 5 years to make sure the cancer doesn’t grow
back. He will have tests done every 3 months. If all test results come back
clear he will have surgery at the end of May to have his central line removed.
This will be just as exciting to Ethan as the end of chemo! He has been very
good at taking care of his line and regularly checking to make sure the clips
are closed.  He protects his line by sitting out on activities where he thinks
it might get knocked. It hurts him if it gets bumped or pulled at all. So we are
saving our big celebration for after his surgery. I don’t know what we are going
to do. Ethan wants to have the world’s biggest party by inviting every person he
knows. I just want to sleep! I mean really sleep without being awake for hours,
checking temperatures, calm a screaming child or think about the long lists of
things that need doing the next day. Did I mention that I’ve been feeling worn
out lately?

I booked some flights for Luke, Blaise and Ethan to have a little boys trip down
to Adelaide in May. Luke was going to go and then I decided that it would be
good for Ethan to spend some time with his Adelaide family and then I thought I
shouldn’t leave Blaise out of the trip! So that will be a mini celebration for
them before the surgery. The boys are looking forward to this. The need to have
something to look forward to has been highlighted to me over the past several
months. Throughout Ethan’s treatment we have always had little things to  look
forward to and it has definitely helped. Camp Quality has had a huge part in
that. Now that we are nearing the end Luke and I are trying to decide when we
are going to go to Disneyland! Everyone else wants to go during the Christmas
holidays as we will make a side trip to Utah to visit some close friends and
family. The kids are dying to see snow, build a snowman and go tobogganing. I’m
the only hesitant one. I do not like the cold!

When Ethan was first diagnosed I mentioned that for those who would like to do
something to help but lived too far away to do so, donating blood would be a
wonderful thing to do. Since that time there have been many of you that have
gone out and donated some of which was their first time doing so. One of my
cousins organised for the Red Cross mobile van to go to their school and had
over 80 people donate blood! That was amazing. Thank you to all those people. On
a weekly basis I see how important blood donation is. Current blood supplies are
low, so if you can spare some time and a little bit of blood I know the Red
Cross would be grateful for your donation. I also know that the recipient will
be grateful to you even though they will be a stranger!

That is it for now. I need to go get everything ready for tomorrow and get some
sleep. Only 1 more sleep until the last chemo, YAY!!!!!

Ethan drew this free hand all by himself and was quite proud of the outcome!

 

 

Filed Under: Uncategorized


CHEMO AT HOME

February 20, 2014 By Jerusha 4 Comments

Dinner with Papi and Grammy on Monday night.

 

All in all things are going great for Ethan! He has put on weight, his skin
colour has returned, his eyes are sparkly again and he has lots of hair! He
loves his hair. It has grown back lighter and straighter than what it was
previously which he is very pleased with! He has more energy and is generally
healthier and happier. Ethan’s eyes (which had become crossed and given him
blurry vision) have gone back to normal. We waited several hours the other week
for the ophthalmologist to officially tell us his eyesight is back on track. We
will have another appointment with them the month after we finish chemo to make
sure there are no lingering affects.

This week he started full doses of chemo again. We were meant to start last
Thursday but his blood counts were too low due to a little cough he picked up.
So we went back to try again on Tuesday. After being there for 5 hours we were
told that one of the two drugs he was meant to get had actually expired! They
had ordered it to give to him last week and had saved it for him. It since
expired. It was too late in the day for them to get a new one ordered from the
pharmacy. So he got his dose of vincristine (this is the chemo drug that caused
his eye problems so they only gave him a 75% dose of that this week but will
return to 100% doses next time). Thankfully the other drug he received this week
was the really low dose drug (he alternates between this one and one other – the
other one takes 3 1/2 hours to drip into him) and so after waiting all that time
the lovely staff arranged for a nurse to come to our home yesterday afternoon to
give Ethan his 2nd chemo drug here in our kitchen. So he went to school for the
morning and then came home at lunch time for his medicine.

Ethan’s pretend scowl when he saw the tray the nurse brought over with all of
the syringes. He had to have blood taken, the chemo, line flushes and hep locked
(a liquid that goes in the line to make sure blood doesn’t clot in there).

The chemo has had some of the same not so pleasant side affects. I won’t detail
these as some things are embarrassing and don’t need to be mentioned. However to
the outside world he is hardly being affected at all! He had to take the anti
nausea medicine today as he felt ill but once the tablet kicked in he got
dressed in his uniform and went to school (well it did take some persuading). He
has been going to school on and off (thankfully he has an AMAZING teacher and
sometimes she is the only reason he goes). He calls me when he is ready to come
home. One day he came home and rested for an hour and then went back again. I’ve
been going to the school on average 4 times a day, thankfully we live close. He
does, however, get really tired from all of this. He uses up all of his energy
when he is out and about and then crashes at home. When we push him too far or
if he is up too late at night he starts getting quite grumpy and irritable. No
matter what room of the house we are in he just lies on the floor next to us.

The biggest difference I found from his dose of chemo yesterday was the quick
drop in appetite and change in taste buds. He didn’t eat at all after chemo
yesterday. Today his lunchbox came back almost untouched and we had to force him
to eat some dinner. After having a couple of months of normal eating today we
were back to some random requests – ice blocks and cabonossi or twiggy sticks!

Overall things are going great. If you were to meet Ethan for the first time now
you would have to really search to find something different about him. He has
kept his humour and wit with him the whole time and often has us laughing at
something. We are working on rebuilding his core strength as well as his
reflexes.

Last week while driving with the kids Vienna told Luke that she wanted to be a
nurse when she grew up. Luke made the comment “that’s wonderful Vienna, then you
can help save lives just like the nurses who have helped save Ethan.” Ethan then
piped up in quite an astonished voice “Could I have DIED from cancer? I never
knew that!” Luke felt guilty about having brought up such a sensitive topic
casually in conversation. It also made us realise that we hadn’t discussed more
of it with Ethan so that he fully realised or was aware. Maybe we thought we had
told him more than what we had or maybe we wrongly assumed he knew more than he
did. But if we had our time again I’m not sure we would do anything differently.
I’m glad he was able to go some very difficult stages of treatment being
positive and not thinking everything was life and death. We didn’t want him to
be scared, anxious, worried or stressed so not worrying about his mortal life I
think is a good thing!

 

Filed Under: Uncategorized


SELLING THE HOUSE

February 9, 2014 By Luke 4 Comments

Here’s the short version: We bought a house in Adelaide (photos at the end of
the post). We sold our house in Sydney on Saturday. We’re renting in Sydney for
another couple of years. Then we’re moving to Adelaide.



Here’s the longer version: After a very eventful and unique second half to 2013,
we were looking forward to a relaxing Christmas an New Year period. What
transpired was actually quite the opposite!

Back in 2011 we decided to move to Adelaide in South Australia (if you’ve never
been Down Under, it’s about a 15 hour drive from Sydney). I grew up in Adelaide
but ever since Jerusha and I got married we have lived in Castle Hill in the
suburbs of Sydney. Jerusha has aunts, uncles and cousins in Adelaide, so has
visited many times, but has never lived there.

We love all our family and friends in Sydney and so it was an incredibly
difficult decision to reach. My parents had received a voluntary missionary
assignment to be a Mission President (to look after about 150 young Mormon
missionaries in an area) and were waiting to find out where in the world they
would be assigned.  Everything was falling into place and we planned to move
into their house in Adelaide when they left.

Then we found out they had been assigned to Sydney and would be living in
Carlingford, only 10 minutes from us! So with our kids having 4 grandparents
close by, we changed our plans and decided to stay in Sydney…at least for
another 3 years. As it turned out their assignment to Sydney ended up being an
additional blessing to us because they were close by when Ethan became sick.

I always wondered if we would in fact end up moving to South Australia. The
longer we stayed in Sydney the more entrenched the kids and all of us would
become. Having lived in Sydney since we were married for almost 10 years and
Jerusha having lived most of her life here, we already felt very entrenched! But
we decided we’d look at the Adelaide move in 2015 and see what was happening and
if it felt right then. With all of Ethan’s treatments it hadn’t been on our mind
at all.

A few months ago in mid November 2013 I had the impression to jump on the real
estate website one night and I started looking at what was for sale in Adelaide.
One particular property stood out to me as being quite unique – it was very
close to the suburbs where I grew up, but was on several acres of land. More
space for the kids to run around and play has always been something that we’ve
wanted for our family, but hasn’t ever been a possibility in Sydney.

So I made some inquiries with the agent, had my sister and her family go to an
open house, still all the while not really expecting it to go anywhere. But the
more Jerusha and I spoke about it, the more interesting it became to us. The
whole process of discussing, pondering and praying over the decision was a very
unifying one for us. After about 3 weeks it hadn’t sold yet and so we organised
for Jerusha to fly down to Adelaide for a day to check it out. This was still
while Ethan’s chemo treatments were going on so it was hardly ideal! But as
Jerusha’s mum pointed out, the best opportunities don’t always come at the best
times.

If she liked it then I was happy to push ahead and make an offer, mainly on the
basis that we could offer roughly what we thought our house in Sydney would sell
for. If she didn’t like it we were going to leave it. As it turned out she liked
it more than she expected and saw some potential in it (read: more landscaping,
gardening and handyman jobs for me). After some back and forth we had an offer
accepted.

All of a sudden what had just been theory up until that point was now reality…we
had to sell our house in Sydney. And quickly. Up until we found out that our
offer had been accepted 1) it seemed unlikely that we would get the Adelaide
house and 2) if we didn’t we definitely weren’t going to be selling our house.

[Note from Jerusha: It took a couple of weeks for Luke to convince me to even
look at the house. I was utterly uninterested in discussing real estate when we
had a sick son to take care of. Luke has always liked real estate and has been
excited about some places in the past. However when he was still excited after a
couple of weeks and said he would be interested in buying it without even
looking at it I suddenly knew he was very interested. It wasn’t that I didn’t
think it looked like a great place, but at this stage we were gearing up for
Ethan’s surgery and recovery and I didn’t see how we could do everything to get
a house ready for market at the same time. So I looked more closely at it and
Luke promised that if I didn’t like it after seeing it he would drop the matter.
So I went down for 24 hours fully expecting to give Luke all the reasons why it
wouldn’t work. Instead I could see the potential the place had for our family
and things progressed from there. And I loved the quick catch up with my family
while I was there.]

One thing that made all this possible was that were were able to negotiate a 4
month settlement with the people we were buying from. It gave us time to get our
house ready for sale in December and over Christmas and New Year and in mid
January it went on the market. So it meant that much of our spare time over the
Christmas and New Year period was spent packing boxes, cleaning up, getting rid
of 10 years of accumulated clutter, moving some of our old furniture out and
moving far more trendy furniture in. At the same time we had Ethan’s radiation
treatments which were often at 7.30am…so we were staying up past midnight
working on the house and then up early to get him to the hospital. Somehow we
had the energy to do it.

With Jerusha and I spending countless hours on work inside and outside the
house, we didn’t spend as much time as we wanted doing fun things with the kids,
although we did try and book in at least one fun activity each day. We’re
grateful for several friends who had our kids over to play during this time.
We’re also grateful for our friend Linda Hart who gave us some great interior
decorating tips, helped us rearrange the furniture in each room – and we were
exceptionally happy with the results. Plus Jerusha’s parents loaned us some
nicer furniture and decorative things to dress our house up.

There were also some professionals who did an outstanding job helping us that
we’ll mention in case you need a removalist, storage facility, painter or
cleaner. Our friends from school, Phil and Sarah Barnett, own Moveworx – a
moving and storage company. Phil and his guys were friendly, efficient and super
helpful. Fred the Painter doesn’t have a website, but if you want a great value
painter in Sydney get in touch and we’ll give you his number – he and his team
got almost the whole house done in less than two days. And our friends from
church the Avilas have a commercial cleaning business and came and helped us
clean for a couple of hours.

 

So after open homes on Saturday Jan 18th, 25th and Feb 1st, we had a final open
house yesterday on Feb 8th and an auction was held directly after. After some
slow moments early on in the auction it moved along towards the end and we sold
 at a price we were very happy with. The way it all worked out and the price we
got confirmed again that this was the right move for our family and that things
were falling into place.

It was a strange feeling going to bed last night knowing that we had sold the
house. We’ve spent out entire married lives of just under 10 years here, but it
feels like the right thing to do and the right time to move on. Over the coming
weeks we’ll be looking for a rental property in the Castle Hill area so the kids
can keep going to the same school. We’ll be renting our Adelaide house out until
we move down there, we expect to be at the start of 2016.

Here are some photos of our current house that we just sold:

The front of our house

Family and living area

The backyard which we have loved

The deck that Papi and Grammy built and the backyard

 

Kitchen and dining room

 

Master bedroom

Photos of the new house in Teringie, Adelaide:

Our new house in Teringie

The view coming down the driveway

There’s a little creek for boat races and finding frogs

 

Some of the backyard before it goes up the hill

Part of the living area

 

 

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MORE RADIATION AND OTHER POST-CHRISTMAS NEWS

January 25, 2014 By Luke 2 Comments

It’s been a very eventful month in our household. Apologies for the long delay
in getting this post up.

Ethan finished his radiation treatment on Christmas Eve. That round of 8 daily
radiation sessions hardly phased Ethan at all, it just made him tired. We made
the daily trip into the radiation unit at the hospital and rarely had to wait
more than a few minutes for him to be able to go in to the room to get his
treatment.

He was very good at lying extremely still and he would tell us that he wouldn’t
even blink while the machine was on. We’d all go into the room and help him up
onto the machine. The staff would usually let him have the controller and make
the bed zoom up and down. He would lay on a specially molded pad which had been
set to his body shape, so that he would be in exactly the same position every
day for treatment. With an allowable error rate of less than 3mm, it’s a very
precise!

 

When the treatment starts we leave the room and can see him on a video screen
and can talk to him through a microphone. The huge machine moves completely
around his body and at one stage a section of the floor lowers so the machine
can move around properly.

Ethan on the radiation machine

Jerusha described in the last post how after his operation the doctors had
advised us that the large tumour had good histology, whereas the smaller tumour
had less favourable histology. Because of the less favourable histology and that
some cancer had spread the lungs it meant that the treatment protocol could be
different. Our oncologist advised us that it may mean several much stronger
chemo drugs in addition to his previous concoctions.
But at the same time, the much smaller tumour had the less favourable histology,
not the larger one, so it seemed to make more sense for the spreading to have
come from the large tumour. But how would we really know? And in cases of
uncertainty they advised that they’d prefer to err on the side of caution. We
weren’t keen at all on him having to have stronger chemo considering how well
he’d responded to the previous chemo treatments and that it was now only mopping
up any stray cells in the body. But we obviously had to listen to the wisdom of
the doctors. Our fervent hope the whole time was that Ethan would receive the
treatments he needed and that the doctors would be impressed to make the right
decisions – this ended up happening but in a way we weren’t expecting.
They were very thorough and got in contact with the head of the global study on
Wilms Tumour in the US to find out which protocol to follow. After some back and
forth communication the Americans requested slices of everything they took out
to do further pathology tests. Our Oncologist told us the pathologist doing the
tests was ‘the big kahuna of pathology for Wilms Tumours.’  The Australian
pathology teams had done their job and had followed the protocol exactly and no
traces of cancer had been found to have spread through the lymph nodes. However
when the Americans took several more slices of tissue they discovered one minute
trace of kidney in one of the lymph nodes.
The result of this finding was that Ethan needed another round of radiation in
the New Year, this time to the lower flank on one side of his body. Had they
known earlier they could have done these treatments at the same time pre
Christmas. So we had another 7 daily trips to the hospital to visit our friends
in the radiation team. Seriously – Han, Verity and their team were wonderful
people and become our friends!
Although daily appointments at between 7 am and 7.30 am each day wasn’t
originally on our plans, we were very grateful and considered it an answer to
prayer that this leading pathologist had for some reason kept looking and
looking. Without discovering what they did a relapse down the track may have
been more likely. And they also decided that he doesn’t need the extra strength
chemos, just the three he has been having. This time round the radiation upset
his tummy. After vomiting all over my car on the way home the first day we
learned to give him the anti nausea medicine before we left for the hospital
each morning.

Jerusha and the kids

Chemo is actually very light at the moment and it’s been fantastic! After
radiation there is one of the drugs that can’t be taken for a while. And they
also have to lower one of the other doses because his eyesight had been quite
negatively effected last year, as well as making him go cross eyed. So he had
one half dose of one drug a couple of weeks ago and that is the only chemo he
has had in about two months (we have had the operation and two rounds of
radiation in that time). The results without chemo have been great – Ethan’s
hair has started growing back…it’s still very short but it’s clearly blonde,
much lighter coloured than before he lost it! He’s started getting the colour
back in his face (no longer as “white as a ghost” as Deano would say), he’s
putting on weight (no longer as “skinny as a cheesestick”) and his eyes are
working much better again. It’s the healthiest he has looked and felt in months.

January 2014 – the kids at home

This period of our lives was destined to be one that has challenged us in a
range of ways. We know that through the challenges come growth and an
opportunity to find out as a family what we’re made of. To add to the complexity
at the moment, another interesting thing occurred, which has kept us incredibly
busy over the past 6 weeks – we decided to sell our house. But that’s a story
for another time! We’ll post again soon we promise.

Kids eating Melon bar ice cream – thanks Grammy and Elder Owens for getting us
onto them. Bluepatch our rabbit is also in the photo.

Filed Under: Uncategorized


RECOVERY AND RADIATION

December 16, 2013 By Jerusha 3 Comments

Well the days keep passing by ever so quickly. I’ve been wanting to write a post
for a few days now but the hours just seem to evaporate into thin air!

Ethan is recovering really well. We had a couple of really tough days in
hospital when they took the epidural out. Every movement caused pain and
distress and so we worked hard to make him as comfortable as possible. Once all
the chords were out I was able to carefully climb up on his bed next to him and
just read him stories and talk. That was nice.

On Wednesday our surgeon came into the room with four people from the radiation
team. We were then taken to a little meeting room to discuss the radiation plan
for Ethan. We had hoped and prayed that he wouldn’t need radiation on top of
everything else. As there were spots in the lungs initially we were told that
the radiation was unavoidable. However because the lungs had come up clear the
last few scans he doesn’t have to have targeted high dose radiation to the
specific spots. He just has general radiation around the whole upper torso to
get all of the lungs. It is done at a really low dose so he doesn’t feel burning
or discomfort. The possible side effects aren’t as severe as first but still not
brilliant at the same time. We both really liked the Doctor who is the radiation
specialist. She is a scientist/doctor from the adult hospital (where the
radiation machines are) and she doesn’t have kids yet we found her one of the
best specialists we’ve talked to yet.

On Thursday Ethan had his mapping session over at the adults hospital. A porter
came and wheeled him and his whole bed over. They carefully picked him up (he
was still in a lot of pain) and lay him on the bed for a ct scan on top of a
bean bag. They sucked all the air out of the bean bag. They then had different
lazer lights set up. They did a ct scan and marked some ‘x’ points on his body
and contacted over them. So each time he has radiation he lays on his bean bag
and they align the machine up with his crosses. The margin of error for
radiating the lung region only is only 3 mm. I was quite impressed with the
process but especially impressed with Ethan who didn’t move at all and let them
do everything without complaining once. He got through it all really quickly
much to their amazement.

Ethan started radiation on Friday. He has to have it every day up until and
including the 24th. He only needs that one course and he will be done with
radiation for good.

When 6 Doctors just walk into your room unexpectedly you know they have
something to say. The results from the histology of the tumours and kidney etc
came in. The fantastic news is that everything was contained within the lining
of the tumours and kindeys. So nothing was growing on the outside. All of the
lymph glands that were removed came up clear as did the adrenal gland. The
histology of the tumours themselves were interesting. The two tumours in the
left kidney actually came out ok. However the small tumour in the right
kidneywas blastema predominant. This is an intermediate result. What does it
mean? Well because there were spots on the lungs we know that one of the tumours
spread. Some of the particles that spread are so small they don’t show up on
scans. That is why we are still doing the light radiation. The results of what
the tumours are determines the chemotherapy treatment post surgery to mop up any
residuals that may still be in the body.

The Doctors are a bit puzzled as to what to do. Do they assume that the
spreading came from the large tumours in the left kidney and follow the treament
plan for that result? Or do we think that the spreading could have come from the
small tumour in the other kidney? Our oncologist said he would err on the side
of caution and treat it all as blastema predominant however they have emailed
the results to the chair of the Wilms Tumour Study in the US and are awaiting
his comments as to how to proceed. The difference between the two treatment
plans is that one would have three types of chemotherapy like what he had pre
surgery. The other would introduce an extra two types of chemo upping it to five
different types of chemo he would receive. The time frame is the same for both
plans – either way we are looking at another 16 weeks of chemo. I really want
them to get it all but the thought of five different drugs when I saw what three
put him through is a bit of a depressing thought! However we don’t have a say in
it, we just need to go forward with whatever is prescribed.

We were originally told that Ethan wouldn’t be discharged until he could do all
of the following things unassisted:

 1. Eat
 2. Drink
 3. Sit up
 4. Stand up
 5. Walk
 6. Go to the toilet

On Friday he could only do the first two by himself however they came round that
afternoon and said they were discharging him. I will admit to being anxious and
worried about them booting him out so quickly thinking he still needed special
care. However I will admit that the Doctors were right, he improved drastically
at home. At home he had motivation to get up and move around. Every day he has
improved drastically on the previous day. He hasn’t had any pain meds since
Saturday and even then he only took panadol. Today he walked from the car into
school to say hello to his school friends for 10 mins. He then stood on the end
of the trolley while I did my grocery shopping! We have had a couple of really
bad nights at home where he has screamed for hours on end with nerve pain and
constipation. Last night in particular was terrible. I say things are going
really well and they are but that doesn’t mean there are not difficult times. We
have had some really tough moments over the weekend.

On top of all that we had Blaise’s school Christmas Concert and a band
information night for next year etc etc. Luke had to make a quick trip over to
Perth for some business meetings today but he is back on the red eye tonight.
Vienna and Blaise had a fun time with family and friends while Ethan was in
hospital. Vienna slept at my sisters for a couple of nights which she loved.
Blaise got to have a sleep over one night with his Grammy and Papi which left
him on cloud 9 for some time.

Ethan had a school friend visit him in hospital which he LOVED. He got given a
skylander swap force figurine which he didn’t let go of for the rest of his
hospital stay. Uncle Sam visited which he LOVED. Aunty Laura and the girls came
twice. Nurse Asha came along too (she has been so dedicated in helping us
through this time of our lives) and of course we had the grandparents visit. On
top of that Ethan had a few visitors which some of you might know. Here are a
few photos from the last week for you:

Ethan arriving during lunch time today to say hello to his school friends. Ethan
showed everyone his cut and stitches and one boy went running off in feigned
disgust.

The school Christmas Concert. Hunter, Xavier and Blaise.

Santa came to visit and took a polaroid photo with Ethan. This cushion has a
photo/drawing of Ethan’s class and he always takes it to hospital with him and
looks at it a lot. He gives his whole class hugs some days.

Iron Man and a Minion came to visit Ethan. Perfect. Ethan loves the game ‘Minion
Rush’ on his ipad

Pappa Smurf and Smurfette. We actually bumped into them when we were in transit
from the adult hospital back to the children’s hospital. Great timing!

The Parramatta Eels

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ON THE ROAD TO RECOVERY

December 10, 2013 By Jerusha 3 Comments

Firstly let me thank you all for your wonderfully kind comments and support. I
went into the hospital this morning and told Ethan of all the people that had
sent messages and his eyes lit up. We are slowly reading them all to him and he
is amazed and chuffed as to how many people are following his progress and
thinking of him. Once he asked if he was a real celebrity and at the moment it
feels like he is. Although I told him he was my hero and heroes are better than
celebrities!

All things considered we had a great day today. We were told he would be angry
and agitated however he was calm, quiet and docile. He thanked the nurses each
time they came in and is being super polite and nice. We were told he wouldn’t
get his appetite back for a few days as his stomach would be so unsettled
however he started asking for food last night and all day today. He kept an ice
block down at 3 pm and went well with some liquids after that. So they were able
to take his nose tube out tonight! The nose tube is what has bothered him the
most (and when I saw how long it was when they pulled it out I don’t blame him).
He was able to have his bed inclined up a bit so he is moving towards an upright
position. This is important to keep the fluid out of the lungs. He was also able
to blow bubbles this afternoon to get the lungs working. So he is ticking all
the boxes towards recovery. That is not to say he isn’t in discomfort and in
there having fun, but he is progressing in the right direction which is
fabulous.

Ethan actually slept on and off the whole day. He would just nod off. Then I
would think he was asleep and find that he was awake just staring into space
listening to me talk to whoever it was talking to me (community nurse, team
nurse, ward nurse, physiotherapist, radiographer, surgical team member,
anethetist, oncologist, the pain nurse and my friend Kath who is a nurse in the
next ward down). We read a few books when he was awake or he would just lie
there and quietly talk small sentences to me. We put balloons and streamers
everywhere, well I did but he instructed me on where to put everything. He was
actually very clever at it.

Vienna came to the hospital this morning to say hello. Then my sister Laura came
for a little visit with her girls and then took Vienna home with her. Blaise
went to a mates place after school and then Luke picked him up to say hello to
Ethan this evening. Blaise got to stay up late tonight to spend some time with
me.It is all working out. Everyone got to say Happy Birthday to Luke!

He might let me post a photo tomorrow, he didn’t want me to post one of him with
his nose tube in and I respect that. I always ask his permission before posting
photos. He has already lost control of too much of his life.

Today, for the first time,  I reflected on when we were told he had stage 5
cancer and given a 50% chance of life. Not once have I ever felt that the odds
were stacked against us. The thought of the loss of life hasn’t been been there.
We just go through each step expecting the best.

That’s about it. We are counting our blessings that’s for sure. Thanks again for
all of your support.

Love Jerusha

 

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SURGERY SUCCESS!

December 9, 2013 By Jerusha 8 Comments

All done! Today Ethan’s surgery went very well. There were no glitches,
surprises or slip ups. Our surgeon and oncologist are both very pleased with the
results, as are we.

So here is the run down of the surgery (well our understanding and knowledge of
it. I’m trying to keep up with all the medical terms and things that are
explained to me. Hopefully my nurse friends won’t tell me I got something
completely wrong):

Ethan only lost a small slice of the right kidney. When they went into the left
kidney there was only a small part that didn’t have tumours. They could have
gone in and tried to do intricate slicing and dicing but after consulting with
the oncologist they decided to take the entire left kidney and adrenal gland
out. That will be better for Ethan long term as it eliminates future
complications of tiny pieces being left behind and going into other organs.

Some could question why we are happy with the outcome when he still lost a whole
kidney and adrenal gland. In my mind there are several reasons why we had a big
success today:

 * The right adrenal gland is working 100% so he won’t need hormone treatment.
 * If the right kidney keeps functioning at 100% which it should then he won’t
   need dialysis or a transplant. These are two things that were a high
   possibility after looking at the initial scan and the percentage of kidneys
   they had to work with back then.
 * All threat to the aorta and spleen have been removed. All other organs were
   not affected. By removing the left kidney any possible future threats were
   removed.
 * There was no internal urine leaks which we were told are common in kidney
   operations. We were warned he could have stints put into his bladder for the
   duration of his recovery. Once again this is common but they didn’t need to
   do this.
 * The epidural worked 100%. He has got full pain relief without any
   complications to the spine or legs.
 * Our surgeon was able to do the operation with one big cut across the abdomen
   as opposed to going down the torso. This is supposedly easier to recover
   from.


Pathology will now be testing the removed left kidney and tumours to make sure
it was all on the inside of the kidney without any being on the outside as well.

We are grateful on so many levels. 3 months of chemo might not have saved the
left kidney but it reduced the tumour in the right massively so he is only
missing a small percentage of that. The tumours in the left kidney shrunk more
than 50% which made it easier to remove and lessened the risks of erupting the
tumour and disturbing the other organs.

When Ethan woke up he had a hoarse cry and a croaky voice. He has a tube that
goes through his nose and down his throat to extract all the bile and fluid from
the stomach. It sucks it out into a bag. This was upsetting and bothering him.
The nurse said it won’t bother him as much over time.  I was so grateful when he
went back to sleep after only 5 mins. It was pretty sad to see him like that.
Mercifully he was still asleep when I left just before 6 pm. He woke up several
times but only for a few moments. He didn’t try to talk at all he would just nod
at the things we would say to him.

He has a canular in each hand/wrist on top of the nose tube and catheter. It is
definitely better for him to be asleep right now!

That’s about it! Stop here if you just want the results from the surgery itself,
keep reading if you want to hear about our day.
When I got out of the shower at 5:40 this morning I heard the boys talking. I
went into their room and they were cuddled together on Ethan’s bed. When I asked
them why they were up so early Blaise told me that they were having special
brother time. A heart melting moment for me.

Ethan said some really cute things this morning. He certainly was expecting
everything he just went through. We didn’t want him to be anxious or stressed.
He just knew that he was going to go to sleep for the tumours to be taken out.
Just before the anesthetic took effect he waved to his tummy and said “bye bye
tumours. Ill never see you again. You naughty naughty tumours. ” he had the 4
medical people laughing. That’s my boy – fighting this with spunk and Witt.

Luke and I had planned to stay in the waiting room but some friends and then the
anesthetist told us to go for a walk. We were told to go eat and relax so we
were prepared for assisting Ethan when he awoke. I don’t think we got to the
relax part but we did go out for an hour. Luke’s license expires tomorrow so we
drove round the corner to Parramatta and got that renewed. We stopped in at San
Churros for a morning snack and mini birthday celebration for Luke (his birthday
is tomorrow). We then came straight back to make sure we were here in time. Then
we waited, and waited and waited until we got the call. Actually we got a
courtesy call to tell us it was going really well but would still take another
hour. Then 20 mins later the surgeon called us and asked us to come to the
recovery waiting area.

The surgeon then gave us all the news I wrote about above. He also told us that
Ethan will be really angry for the next few days as a result of drugs and pain.
After that it should get better.

We sat next to Ethan in the surgery recovery room for a few hours. They were
ready to send him to the surgical ward after an hour. A bed had been arranged.
We always go with whatever we are told to do without pushing or asking for much.
Today I decided to be a little bold in a friendly way. We had been talking to
our nurse throughout the hour and got along really well with her. She is a
mother of two boys similar in age to ours. One of her boys has had to have
surgery there at Westmead before, so on top of being an experienced nurse she
understands the emotions and feelings of what the mother goes through. So I
asked her if she knew how many people we would be sharing a room with. I also
asked if there was any way we could swap to an electric bed. Normally whatever
bed you get when you arrive you keep for the duration of your stay. With my back
and rib problems I can’t lift the manual beds up and down myself so we have to
keep pressing the nurses button or I tell Ethan to just leave it and deal with
it so we don’t disturb the nurses. She called the ward and was told that we were
in a shared room of 6 and that no we couldn’t have a different bed. I asked her
if they knew we were an oncology patient and told her about how in our other
shared rooms in the non oncology ward the other patients have lots of people
visiting who were coughing/sneezing etc. We are always told to keep him away
from that and then we are surrounded by it in the hospital. So she was very kind
and told us she would give it another go. She called the ward and told them that
Ethan had had a huge surgery (which is true) and that as an oncology patient a 6
bed room wasn’t appropriate. She explained that the nurse on duty would have to
be lifting the bed up and down every time during the mothers day shift. She was
told they would send up an electric bed for Ethan and that if we could wait an
extra 2 hours there was a single room being vacated and just needed to be
cleaned. As the recovery room wasn’t overly busy the nurse happily agreed to
take care of us for the extra two hours. We weren’t pushy, demanding or mean. We
had built up a friendly rapport and just stated the facts. So we are in a single
room with an automatic bed in the surgical ward!!! Very happy about that. That
is amazing! We are stoked!! Can you tell? All thanks goes to an amazing nurse
who knows both sides of the coin. She was wonderful. She even told me I should
stick up for Ethan more. She said the parent has to fight for their child or no
one else will. Amen.

It was nice to see the other children tonight. Sam came over to our place at
6:30 to look after them and take them to school. A lovely mum from school who
also has a daughter Vienna’s age took Vienna for the day. They have played
together multiple times and get along well. Then my mum got them from school at
3 and had them for the afternoon. When I got home we were all happy to see each
other again. Blaise wanted to hear about everything as he had been worried about
Ethan throughout the day. Vienna was happy to tell me about playing with her
friend and going out for a milk shake and donut.
Everyone was a wonderful help to have it all go so smoothly. To top it off I had
a hot meal on my door step when I got home from a lovely lady from my church. I
was starving and it was delicious!

Thank you all so much for the texts, emails, thoughts, prayer, love light and
positive energy you’ve been sending us. You’ve all been amazing. Yesterday I was
starting to feel nervous about leaving my son in the hands of a surgeon without
being there next to him but then I was blessed with peace. I can honestly say I
felt a peace that it would go well and that has helped sustain Luke and I today.
I know our prayers have been answered. I feel immensely grateful right now.

I was asked today how I could feel grateful for anything when my son has cancer.
The answer isn’t simple. Pain and suffering are never easy to understand or
bear. The truth of the matter is we learn and grow through our tests and trials.
If everything were easy we would never change, we would never learn and we would
never become better people. Ultimately I feel that life is about learning,
growing and becoming the best person we can be. Yes we want to have joy in the
journey. No we don’t want to suffer. No I don’t want my son to suffer. Given the
choice of course I would never in a million years choose this for him. If I
could take it on me and have the cancer instead I would. However I can’t take
the cancer away from Ethan and I can’t change the trial which has been given to
us. Accepting this challenge and facing it head on is what helps us get through.
This is how we cope and keep going. There are so many things I hoped for and
prayed for leading up to the surgery today. I have hope. I have faith. I feel
that God has answered  my prayers and your prayers and well wishes. That is why
I can and do feel grateful.

Filed Under: Uncategorized


THE LATEST SCAN RESULTS

December 7, 2013 By Jerusha 2 Comments

We finally got our scan results on Friday. We have been waiting for this from
the beginning. The shrinkage has been huge! Our oncologist was amazed. The
surgeon said we’ve had the best possible outcome.

The tumour in the right kidney is now really small. They will just slice the top
of the kidney off with what’s left of the tumour. He will be able to save 95% of
the kidney!

For the first time ever we are actually able to see some of the left kidney as
opposed to just seeing tumours. The two tumours are now visibly separate. The
big one is in the top of the kidney and the smaller one down the very bottom –
leaving some space in between. We were told the overall aim is to do what is
best for Ethan. That means that they will try and cut the tumours out and save
some of the kidney. However, if the surgeon thinks any remnants will be left
behind or that the other organs will suffer the surgeon will remove the whole
thing knowing that Ethan will still have a fully functioning right kidney. This
is a decision the surgeon will have to make on the day during the surgery. No
one can predict what it will be like once they are on the inside.

The tumour in the left kidney goes right up to the valve leading to the aorta
and the spleen. They need to make sure they get all of that. It is also right on
the adrenal gland. There is a chance they will have to take one (and worst case
scenario 2) of the adrenal gland. If this happens he will need cortozone and
hormone replacement therapy (for life if 2 are removed). Obviously we are
praying that he can keep the adrenal glands! I think they were just telling us
the worst case scenario. They have to tell us all of the possible things that
can go wrong and there was quite a list. However our surgeon is confident and we
have a lot of confidence and faith in him.

Despite the lungs being completely clear for the past 2 scans they are still
planning on going ahead with radiation but at a lower dose. This could happen as
soon as 5-7 days after surgery. I was under the false belief that we would be
having some recuperating and recovery time after surgery. I was wrong. They
couldn’t tell us when we would start the chemo again but it will be before
Christmas. Ethan just needs to tick of 6 recovery boxes before he can start
chemo again or come home. I asked our oncologist to give me at least a 2 days
heads up for when they are planning on starting the chemo again. Ethan isn’t
prepared for that at the moment. I think he thinks he is going to have the
Christmas holidays to do with as he pleases.

We were a bit sad to have to go to the hospital 3 days this week. However we
managed to have a great day on Friday. Once a year they have party day and we
managed to be there for it today! All of the nurses and doctors were dressed up
in different themes. There was face painting and balloons but we didn’t line up
for that – we just enjoyed the atmosphere as we walked through and liked looking
at all the different costumes. Each ward was decorated in a theme. The clinic
where we were had an Indian theme. There were big sheets of silk draped
everywhere and all the workers were in saris etc. There was a table of party
food so Ethan and Vienna had fun with fairy bread and poppers. Ben 10 and a
couple of Waratah players made a visit to our waiting room and gave the kids a
teddy bear each. Members from the surgery team were dressed up as animals. Our
surgeon was dressed in a lion onesie. Quite funny actually. And yes we still
trust him to cut our son open on Monday!









Everyone we passed and came across was happy and in a party mood. It’s amazing
how many different staff members I recognise and know now. I was able to point
out  a few different people to Luke as we walked along. So party day definitely
made up for the fact that our meeting got changed from Thursday to Friday. 3
trips to the hospital this week wasn’t originally on the cards but we made it
all work. The kids had a great time.

Ethan has actually been great this week. He is happy and has a lot more energy.
He is eating large amounts of food. He was able to get out and about quite a
bit. His cheeky personality is in full swing. I cancelled all of the meals for
the week as I felt I could cook and be independent while Ethan is on a high.

We welcomed home my brother Sam this week. He just completed two years service
as a mormon missionary stationed in New Zealand. We were all very excited to
have him home again.

We also got to meet my little niece Amelie. Alaine brought the kids down from
Newcastle for a day to see Sam and pick up their new car they bought from a
dealer here in Sydney. All the kids got to play together for a few hours which
was lovely. Cousins are wonderful.

Thank you for all the love and support. The whole family feels the love and it
does help us immensely.

Filed Under: Uncategorized

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