Tuesday 28th June 2022

2 Years Of Change & Uncertainty In Covid 19 Times. Pt. 2/2. March 2021-2022. 18/2022.

2 Years Of Change & Uncertainty In Covid 19 Times. Pt. 2/2. March 2021-2022. 18/2022.

Recently we clicked over to the third year of having Covid 19 affect so much of our lives as we knew them…from any days, months and years before.

It was a gradual process in some ways and I wrote about some of it here.

Messy writing…from calendars: 2020. 2021 & 2022

However as time went on, and into 2021 we here, in our part of Australia, New South Wales, we lulled into a type of life that resembled one we remembered well.

March to June 2021.

I drove to Newcastle for the first “in-person” event in Covid safe conditions for the Newcastle Writers’ Festival and heard Julia Gillard interviewed by Rosemarie Milsom, who is one of the women of courage, here.

We had high hopes that the 2021 Festival would happen. Sadly, it did not but was an on-line one. All fingers crossed for 2022 as I already have my tickets to see and hear Jane Caro AM,a woman of courage who started my series, here,  Trent Dalton and Kate McClymont.

In our case we did this:

  • I visited my father in Sydney and left him set with more meals and treats.
  • We had school holiday visits (April 2021) from our son and his family.
  • School had been going pretty normally for many and there was a good atmosphere seeing children back at school.
  • Parents often chose to work from home and that did help when there may have been some reported cases of Covid in schools and in workplaces.
  • We had the daily updates from NSW Health and the Premier.
  • Many people did find these stressful. I learned to check the summary rather than watch.
  • We wore masks, we were careful about where we went, but we generally felt safe.

Our granddaughter celebrated her 9th Birthday in April 2021 with a family and friends picnic in a large regional park and it was clear how everyone relished being out again, and meeting with others as well as enjoying the outdoors.

A.N.Z.A.C. Day came, on a Sunday, and there were small and large ceremonies in N.S.W. I chose to go to Norah Head and watch the sun rise on this very big day.

I went to see my father again, and he was staying well. Life seemed good.

I had already returned to meetings of the head and neck cancer group on the Central Coast, and after the May meeting took the chance to walk around the Boardwalk at Terrigal.

 

 

Mid May 2021 I celebrated four years since my head and neck cancer diagnosis with a trip to Sydney to see Hamilton on a Sunday afternoon. I had not been back to the harbour area for some time and I enjoyed a joy-filled walk around Pyrmont before the 1 pm. show. The Lyric Theatre was well-organised for social distancing, we had to wear masks and obey the Covid Safety instructions.

I met up with friends when we could, as social distancing was fine in the shopping centres. It felt so good to do that again.

I also go to Sydney’s Westmead to have mouth check by my prosthodontist in May. So glad I could.

As part of my role as an Ambassador for Head and Neck Cancer Australia, I met with N.S.W. Senator, Deborah O’Neill in her Central Coast office and when we parted said we would see each other at the Parliamentary Breakfast, being hosted by Sen O’Neill and Dr Katie Allen, in Canberra in June 2021.

I made plans excitedly to meet up with blogging friends when I was to come to Canberra, and booked accommodation.

Sadly, over three separate periods, until the end of 2021, the Head and Neck Cancer Awareness Parliamentary Breakfast was postponed….and there is no plan for a 2022 one..because….well, there is likely to be an election soon….

I needed to continue some kind of regular daily routine and the blog helped greatly here.

I also decided to invite more women to share their Stories of Courage on the blog. I had a few women who kept promising me their stories, but the weight of covid restrictions on them in the latter part of the year saw them drop out. They were under a great deal of stress…just managing living alone and working too.

In this household we got excited in June.

We got our second Astra Zeneca vaccinations.

The latter part meant our second youngest granddaughter was turning 8 and we had fun ideas celebrating here with her dad and siblings and were ready. Until.

This.

Lockdown.

It was announced on the last weekend of June.

June – October 2021.

The Premier called on us all to manage with the strictest of conditions to date. It was OK for us, as we were already used to being at home as retirees.

It was not good for:

  • travelling
  • visiting
  • going to another person’s house
  • working other than at home, or in a health facility or a school/childcare where kids of essential workers could attend with minimal staff, and careful supervision.
  • having surgeries that were non-urgent
  • visiting ANYONE in a care or hospital-like place as well as hospitals
  • connecting
  • giving birth with a partner
  • getting married
  • having a funeral

so much just had to

S

T

O

P

and it felt the right thing to do at the time.

But it crippled so much business, and affected people’s health.

I can only write about our N.S.W. and Central Coast experience. 

Other places were either not affected (other than no-one could come and go) or had already been in lockdown before.

I found myself at a bit of a loose end on that first day. A Sunday. I went for a drive into Wyong, and walked about a bit taking some photos. I would not be back for months.

How We Managed This Lockdown.

  • Once my husband and I knew what we could and couldn’t do, we set ourselves up as only going out once a day in the car (and that was legal, once a day) and for essentials.
  • He could go to Bunnings but rarely did.
  •  He visited the chemist and did a weekly grocery shop at one Woolies only.
  • I went out once on a day he had not been anywhere and usually to a stand alone Coles, using the QR codes, wearing a mask and getting in and out fast.
  • I made a daily photo record. It helped give me something to do.
  • Blogging still happened but I needed more focus to get me out of boredom.
  • I could still visit some areas of nature within a certain boundary of home.
  • Later, I realised I could have gone further but I waited till September/October.

I was able to see my dentist, but not my prosthodontist at Westmead because they were deployed for other health services. My dentist did a great favour for me and my progress by taking photos inside my mouth and they were used by my head and neck cancer surgical team to determine how I was going via a telehealth call in September. We had in-person visits to GP and telehealth with some other doctors.

Honestly sometimes it is better not to know how long something will go for….

 

School kids did not see each other, except via zoom.

Families were separated for a long time.

Teachers and schools had to continue remote learning systems and programs for a VERY long time

Mental health professionals were concerned for many people in different settings and professions. Telehealth services for psychologists expanded.

No travel between state or territories unless for approved reasons. Many were not approved.

Very few could travel overseas, even for urgent and humanitarian reasons.

Our daughter turned 50 and she had a lockdown zoom birthday. She was given some special gifts including a cameo to her from Trent Dalton.

The lockdown went for 106 days.

In that time my hair grew more than I had ever known since I was about 20 years younger and I hated it…so occasionally B would cut some off. I returned the favour.

The Premier of N.S.W. resigned…and yeah, OK, we all said. Next?

Seriously, we (us) were over it and longed for more guidance and commonsense.

I’d like to say that happened but it didn’t.

We got our haircuts eventually. B before me as my hairdressers had to wait till the staff were fully vaccinated.

Our daughter and her youngest drove up to see us. Happy times! No photos. I look shocking…lol.

I got back to see Dad. He found it so lonely but remained well and was double vaxxed. Took him usual food packages. At least I could still cook and I did.

I was saddened to know a friend of mine died from an awful cancer. I attended his funeral via a link.

We got down to see our son and his crew and that was special too.

Mid- October – December 2021.

I also found that I was determined to get out and about once I could and that proved to be not as good for my emotional health as I may have thought.

We did do our morning tea thing on my 72nd Birthday and that was fun. Heard from our family and made feel very special on social media too.

THIS matters the most: Love.

It was in the period late November 2021 to February 2022 that I became aware of doing too much. And with Covid around, there was/is all the more to be concerned…is it Covid??

I had a virus of sorts..not covid and my health affected my confidence and my ability to meet others or travel to Sydney because I felt drained. I had covid tests. All OK. But in having to have covid tests (P.C.R. ones) and await results this took FAR too long for return of results. That is why we missed Christmas Day with all our family in Sydney….and then, as I felt worse again in January, my father’s turning 98. I did eventually get to see him. Our family all came here in January but Covid sure does make planning challenging impossible.

One friend, and her husband and kids drove to  Canberra from Sydney to see their family but on their way, got a covid positive notification and boom holiday cancelled, presents left with family, and a turn around back to Sydney. In the end, only that ONE family member got Covid.

New Year’s Day I drove to West Gosford – about 45 minutes from our place – to pick up a click and collect parcel and then to Coles to get bananas and see if the rarity (then) of RATs tests were on sale. They were. I grabbed a pack of 5 for $50. Used two of them on me during January and still had one PCR rest as well. Negative.

There are stories like my friend’s  in our family too. Some get Covid, others not. No rhyme nor reason. RAT is negative, PCR confirms, then later its positive.

January into February and March 2022. 

We had almost all of the family here late January for lunch and the most important getting our daughter’s and son’s signatures on our updated legal papers.

and 6 of the 8 grandkids came too…what fun!

By February 2022 the Australian Government and State Governments were able to get in sufficient Rapid Antigen Tests for pharmacists to stock them and eventually for those like us, on a pension, to receive them for free. There are far fewer line ups for PCR testing at local clinics but they are still operating at time of writing. We celebrated B’s birthday with morning tea out…and no photo but a week later, his older brother visited and that was very special. I made this collage…B is from a very large family, and these two are less than 2 years apart.

At present, we are still choosing to mask up at the shops and inside shopping centres. The doctors’ rooms insist on it. The QR checkins have gone. There is travel between states and territories and overseas too…not as much as before, but it is growing.

Then at the end of February into March 2022, the eastern states of Australia fell victim to an enormous rain event, leaving people homeless, and with no work prospects. Australia’s response to this “never before event” was not great. And those of us watching on felt helpless. We were not directly affected. However, it was unprecedented and many places had waters come in where they never had before. Once it was safe, I did venture locally.

Lakes Beach erosion

Wyong River at Milk Factory.

Keeping as healthy as I can.

I have already mentioned I was not 100% well for a few months and so did the right thing, for me, and have cut down rather than cut out what is important to me: connecting with others. The blog has been quite a lifeline to others, along with social media connections. I never felt too lonely when I could ‘chat’ or ‘comment’ to friends on-line. I have taken stock of my health, and still mid some check ups but going more slowly to help me first.

I admit that Covid 19 took its toll emotionally with its uncertainty, and constant change.

Along with the second year being so much more political it made me decide that arguing back on social media was hurting me, not anyone else.

What now?

I have no idea. Most of our family who are in daily contact with the wider world are fully vaccinated but have also had covid. Go figure.

I am doing my best to live as peaceful a life as I can, with my greatest responsibility to keeping well, mentally and physically.

My day consists of great interactions with my husband, a visit to a local area and/or shops. I start with meditation and gratitude practice and finish the day similarly. I am actually reading a book of fiction right now…The Mother by Jane Caro. It’s a thriller of sorts. I am making my way slowly through Brene Brown’s Atlas, and listening to a variety of books on audible, the one I am finding the most fascinating is The Body Keeps The Score.

Take care, friends and readers.

I hope this missive has not been too onerous to plough through.

I blog to connect…and also to keep the stories alive!

Thank you all,

Denyse

Joining in with Natalie for Weekend Coffee Share today

Thank you Natalie.

https://natalietheexplorer.home.blog/

 

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2 Years Of Change & Uncertainty In Covid 19 Times. Pt. 1/2. March 2020-2021.16/2022.

2 Years Of Change & Uncertainty In  Covid 19 Times. Pt. 1/2. March 2020-2021.16/2022.

I’m composing this post getting close to the 16 March 2022 which marks the 2nd anniversary of “covid bringing change to the way we would be living our lives”…as announced by the Prime Minister of Australia.

There was already much happening in the media as we watched what was happening in other countries….and from where it all seemed to start in Wuhan, China in the latter days of 2019.

My post is about how it affected me, and our family and in some indirect ways, many of those who read here too because of the state-based restrictions and federally based ones.

Dear readers, we are a complicated country for rules and governance and it all goes back to 1901 when we became a Federation of States & Territories: Australia.

The short story is money comes from the Federal or Commonwealth governments (Australia) and is filtered to the States via government of the day policy AND State decisions are made for Health and Education.

Look, sorry, it’s hard to get a handle on this at times….I know. I lived with it as a school principal. Nevertheless, here’s my post, mostly with photos, marking the two years of:

CHANGE

and

UNCERTAINTY

2020- continuing into its third year…2022.

March 2020 onwards….

I was so fortunate to have had both my eyes surgically operated on for cataracts in the week before EVERYTHING changed. Phew. I was also able to get to have an in-person head and neck cancer surveillance check, attend a head & neck cancer  charity ball as the speaker, and to be WELL!

 

And then, over time, we knew we had to stay at home as much as we could. Necessary outings were to:

  • the supermarket
  • the pharmacy
  • the doctors

I could no longer follow this: going out each day to have a coffee and browse at the shops. 

On occasion, when safe, we used “click and collect” for stores such as Big W, Target and Bunnings. We did not do click and collect groceries as it became unreliable, and expensive. I was prepared to take the risks. I shopped quickly, with plastic gloves on, and a mask. However, many food and other items became rare or not found.

Yes, there was such a thing as a toilet paper blitz (I confess, we got in plenty) and not many choices, if any, in fresh meat etc.

So much changed because of panic buying, employment changing as people got covid and…the whole supply chain was affected: truck drivers, distributors too. Anything that might come by plane was not easy to come by because flights changed significantly, and ships were also not allowed to dock if anyone on board had covid.

We all watched the updates on T.V. with the N.S.W. Premier, the N.S.W. Minister for Health, and the Chief Health Officer….for a while, then in our case, we stopped.

It was far too worry-inducing.

It was, for some people, a compulsion to watch and then tweet about it but in my case, I decided better to stay away from those kinds of updates.

Of course we did as requested, and at the doctors’ we had to comply with questionnaires about symptoms (still do) before being seen OR as they preferred then, via telehealth.

April into May 2020.

We were surrounded by neighbours not normally seen as everyone worked from home, and schooling was remote learning.

Every day we saw many people strolling around the neighbourhood. Gyms were shut.

We got through a very quiet Easter.

And as one way to remember “A.N.Z.A.C.” Day 2020, people around Australia held their own driveway Dawn Ceremonies.

Our granddaughter turned 21 early May and there was still travel restrictions from where we lived to Sydney and vice versa…but by Mother’s Day 2020 we got to see family.

We did a socially distanced photo!

Close for this one: Mother’s Day 2020

June, July and August 2020.

I needed surgery (and had probably put it off for too long) so that consumed the next months for me. Even though I had had 4 surgeries for head and neck cancer, this particular surgery: repair rectal prolapse was not a great prospect. I know, however, it WAS a great one to have but I was a scared woman before it, and not because of covid. I admit though that with doctors and hospitals I did it mostly alone because of Covid. My husband was allowed to visit me in July but not for the wound debridement in August.

Covid Meant Rules Changed A LOT.

September to December 2020.

It was not like the world we knew before Covid.

Doctors and other health professionals took a lot of care to see that no-one with any cough/temperature etc came to their rooms.

I still got my September 2020 Cancer Check at Chris O’Brien Lifehouse…lots of safety measures and most of the place were the public would normally be present were closed. Patients with cancer have low immunity and that was the reason such strict measures were in place.

There was talk of vaccines being developed.

Economically, we were OK. We are retirees, and receive a part pension. Many others I know had to ask for supplemented income and in the first year of Covid, it was pretty stable, getting people paid, able to stay at home to work. Remote schooling continued on and off. It was very hard socially on many.

Kids really missed their friends. As did most people who enjoyed socialising. Some though, I know, loved being at home working and would like that to continue! We managed our trip back to Tamworth in October 2020 and that was a special one.

Sadly, we did not get to have Christmas as planned with our daughter and her family as Covid ramped up just before Christmas, on Sydney’s northern beaches. Although she does not live there, I had seen Dad who lives at Dee Why AND visited Manly, so I had to have a test, which proved negative and I had to come to Sydney for a mouth check so rather than both of us risk a Christmas Day travelling…I dropped off the goodies and gifts on my way.

Little did we know that the NEXT year’s Christmas would also be affected. Sigh. Next post!

January 2021 – March 2021.

I like to plan and have good things come together well.

So, I did get to see my father for his 97th Birthday. I did not get to see some family for their birthdays just because nothing was planned and we would see them soon.  The restrictions into January were very tough on visitors to the home.

We could only have 5 and that meant our PLANNED Golden Wedding Anniversary on 23 January 2021 for 13 had to change. We held a lunch for our son and his 4 on one day and then on the actual day, for our daughter and her family. It was a lovely time….and I have written more here.

By February things were less restricted and we were able to have ALL the family together for a morning tea celebrating my husband’s birthday.

And then school was back…I think…in a very restricted way over time. Our youngest granddaughter started school and then, later in the year, was part of remote learning for what seemed forever…more next post.

That was the twelve months…March to March …about Covid in particular.

 

I dealt with the uncertainty by keeping as many of my daily routines as I could.

  • I always got dressed each day before having breakfast.
  • I made sure my exposure to social media was less over time as I knew it affected me.
  • I gave myself little inner talks most days about what I COULD control and what I could not…I admit, I do this most of the time.
  • I also had faith in how the country was being cared for at this most unusual and uncertain time.
  • This slowly changed, but not in the first year.
  • I learned that I can get over things I have planned that cannot work out.
  • I also knew that gratitude found on the hardest of days was a help.
  • I know getting somewhere most days into nature was important and we have such a range of places here….and I know I needed to record photos and videos to share.

And the BEST part: March 2021, we received our first Covid Vaccinations: Astra Zeneca. 17 March 2021, the day booked once they opened.

I also wrote posts here here and here for 2020, as part of Telling My Story:

Telling My Story. Image #8.

How was March 2020 to March 2021 for you, Covid wise?

Take care,

Denyse.

Joining in with Natalie for Weekend Coffee Share today

Thank you Natalie.

https://natalietheexplorer.home.blog/

 

 

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Women Of Courage Series. #72. Alice Leung. 113/2021.

Women Of Courage Series. #72. Alice Leung. 113/2021.

 

Two years ago… I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday into September 2021 when it will conclude.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda

Trigger warning: miscarriage and infant death. Information may be found at the end of the post.

 

To introduce Alice Leung properly I will say she is someone I admire greatly professionally and personally. We have met, so many years back now , at a Teach Meet when I was living in Sydney. Being on twitter, as a supporter of all matters education,  I see Alice’s tweets and know how much she puts into her education thoughts, and actions. In her late 30s now, when I asked Alice to share her story, I was not surprised when I read her response. I do, like many of her friends and family remember these experiences well. Alice and I determined that we include a trigger warning for this post, and information at the end of the story. Thank you Alice.

 

 

 

 

What have you faced in your life where you have had to be courageous?

There has been two times when I had to be particularly courageous. The first time was when I lost my second child due to a miscarriage and the second time was when I gave birth to my third child at home (I didn’t plan for her to be born at home; she came too quickly!).

 

The miscarriage was a very early miscarriage. As a science teacher, I am very aware of embryo growth and understood that the baby was lost a very early stage when he/she was a bundle of cells.

I didn’t expect to feel the great sense of loss that I ended up feeling for “a bundle of cells”.

It was hard to deal with the internal dialogue of what felt like logic versus emotions.

I chose not to take leave from work and pushed through it.

It was not an easy time and my first experience of living through what I felt as a tragic loss while the world just kept going and I had to eventually also just keep going.

 

The birth at home was a very different courageous experience.

I didn’t plan for my third child to be born at home.

I just couldn’t make it to the hospital in time.

An ambulance was called and paramedics came right at the moment she was born.

Birthing a child away from a hospital setting and without health professionals carries high risk and that went through my head throughout the birth.

However, I carried on remembering everything the midwives told me with my first child, the advice that was over the phone from the triple 0 operator and just do what needed to be done.

 

How did this change you in any way? Please outline further if this has been the case.

I think both experiences have made me stronger as a person.

Whenever I have to do things that make me nervous like presenting to a large audience, I often joke that I’m not nervous because this is nothing compared to birthing a child at home yourself.

If I’ve done that, I can do anything.

 

Is there something you learned from this that you could recommend to help others who need courage?

Courage comes in many forms.

Courage doesn’t have to be a highly visible and theatrical event.

It can be something that is very personal, private and simple like continuing to carry on when it seems to be impossible.

 

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

Yes, because I’ve done it before and know that I can get past challenges.

So even though the situations that require courage may now be different and will be different in the future, I have more confidence and belief that I can get through it.

 

Is there any message you would give to others facing a situation where courage could be needed?

One step at a time. And there will be steps back. But just keep moving forward and eventually it becomes easier.

 

Oh yes I remember the events you describe Alice and I am so sorry for your  the loss of your second baby. I do remember, like many who are your friends…and via twitter, hearing the news about your third child. It was an amazing feat for sure. Thank you so much for sharing. I like the way you compare what you did back then to when you are speaking in public, and via media. You are doing an exceedingly good job in your role supporting the NSW  Teaching Profession. Thank you for all you do there too.

 

Denyse.

 

 

 

These sites are Australian-based. 

https://www.panda.org.au/

https://www.sands.org.au/stillbirth-and-newborn-death

Lifeline Australia – 13 11 14 – Crisis Support and Suicide …

 

 

Alice’s social media.

Blog/Website:  aliceleung.net

 Twitter: https://twitter.com/aliceleung

 

Joining with Natalie here for Weekend Coffee Share.

Copyright © 2021 denysewhelan.com.au – All rights reserved.

 

 

 

 

 

 

 

 

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Women of Courage Series. #68 Gloria Hill. 101/2021.

Women of Courage Series. #68 Gloria Hill. 101/2021.

Two years ago….around this time of year, I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda

 

I may not have (yet) met Gloria Hill, aged 48, but I already am very aware of her role and input as a parent into the very newest public school which opened in 2019. This is North Kellyville Public School, and I am a proud retired principal who continues to support public education in N.S.W. Our daughter is the teacher/librarian there, becoming foundation year staff member, and I recall seeing the many positive and amazing projects which the foundation year Parents and Citizens group (P&C) initiated. To that end, Gloria, as the 2019 P&C Secretary and later as the 2020 P&C President was nominated for the 2020 NSW P&C Federation Volunteer of the Year Award, and was one of 16 Finalists after winning the North West Sydney Electorate. Thank you Gloria for sharing your story with us. At the foot of this post is information from Gloria.

 

What have you faced in your life where you have had to be courageous?

In 2012, my son Sean was diagnosed with a genetic disease at the age of 12 months.

  • The disease is called Severe Combined Immunodeficiency (SCID) and people born with this disease are effectively born without an immune system.
  • Most undiagnosed cases do not survive infancy.
  • I was not aware I was a carrier of this glitchy gene, nor that I had passed it on to my son.

As a first-time mum, I did not know why my little man would take weeks to get over a cold, or why a small nappy rash would leave his entire bottom a red raw open weeping wound for days on end.

That first year was spent advocating for my son with various medical professionals – we got to know our GP and our early childhood nurses very well, to the point where one medical professional noted the frequency with which we were visiting the doctors’ surgery and flippantly told us we should be earning frequent flyer points for all of our visits.

For his many ailments, Sean was prescribed every potion and lotion available from our local pharmacy, but there would still be extended periods of ill health between the bright and happy days.

After many months of bashing down the doors of various doctors, a chance meeting with an early childhood nurse fast tracked the diagnosis when she insisted that Sean be seen by a paediatrician immediately.

  • In the space of 2 hours, we went from being just a number in a queue to Patient #1 at the Sydney Children’s Hospital Randwick.
  • The diagnosis came quickly, and the treatment plan followed – we would have to consent to chemotherapy and a bone marrow/stem cells transplant to save Sean’s life.
  •  He was 13 months old, my first and only child, and my husband and I sat through all the medical scenarios and diseases Sean may develop post transplant, all of the scenarios ended with “if this disease developed, then Sean may die”.
  • The bone crunching, soul destroying scenario was presented last – if we did not consent to the transplant, then Sean will die.

 

On 27 March 2012, a specialist team performed a miracle by transfusing 30mL of precious stem cells into Sean’s little body.

  • Over the next 5 weeks, we watched Sean’s condition worsen before he got better.
  • In a comparatively short period of time time, Sean’s body recovered from the treatments as the stem cells grafted in his body and he grew stronger by the day.
  • We were discharged from the hospital in May 2012 when the real fun awaited: a lengthy period of self-isolation with an inquisitive toddler quarantined in a small house while trying to manage weekly hospital check ups, the complicated medication schedule, the new diet (both liquid and solid), and the upkeep of his medical accessories (nasogastric tube and central line) tested my patience.

 

By the end of 2012, all the hard work paid off.

Sean was weaned off all medication, and all of his medical accessories were removed.  Sean’s appetite returned and he was thriving again hitting all of the growth milestones with ease.  The weekly clinics at hospital turned into monthly visits, and by the end of 2013, the visits would become an annual check up.

Today, 9 years since the transplant, Sean is a healthy 10 year old who loves to swim, ride his bike, and read, with a healthy appetite and an even brighter outlook on life.

 

How did this change you in any way? Please outline further if this has been the case.

I learned to trust my gut instincts and not back down, especially when I am advocating for my family and my loved ones.

I learned to look for silver linings, because the alternative was too sad.

I learned to show my vulnerability and accept help in all the different ways that were offered to us.

I learned to take a deep breath and push on – sometimes, it just IS what it is, and I have to get on with it, because there is no other option available.

 

Is there something you learned from this that you could recommend to help others who need courage?

Lean on those you trust.

Some friendships will grow and transform to the next level.

Expect to lose friends and see friendships shift – you may be surprised by who “slip away” and bow out of your life, but don’t begrudge their departure.

They are not bad people; they just don’t know how to support you.

You are not alone.

AND you don’t have to do this alone.

There is help and support available, everywhere.

Never be afraid to reach out for help.

And if help comes to you, accept it.

You are not weaker by seeking or accepting help – in fact, you are the stronger and more courageous one for seeking or accepting help.

Specifically to a medical condition: listen to the professionals – if they tell you not to Google the disease, then don’t Google the disease, especially at 3am when you can’t sleep.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

I don’t think I could be more courageous now than I was then.

In 2012, just after diagnosis, we found ourselves “shedding friends” – people who called to check in on us, but then picked fights with us over trivial matters.

The drama that some of these former friends created at the time distracted us from the real focus at hand – the life and health of our critically ill little boy.

In hindsight, I came to realise that these people may not have been strong enough to support us, nor knew how to support, nor knew how to react to the news.

Whilst it was disappointing at the time, the loss of these relationships was actually to our benefit.

At the same time, our true friends stepped up and found innovative ways to support us.

Financial donations flooded in from well meaning friends who wanted to make sure my husband and I were fed during our hospital stay and we had money for petrol to get to and from the hospital.

Friends cooked us meals, took us out for quick meals (just so we would leave the hospital room and get some fresh air), and called and messaged us to get up to date news on Sean.

We still have the same loving network of family and friends who rallied around me then, so if I had to face the situation now, I know I have the support and love to get through it.

 

Is there any message you would give to others facing a situation where courage could be needed?

You are not alone.

You don’t have to do this alone.

And asking for help is not a failure.

To ask for help is a sign of strength, so reach out to family and friends, and lean on them.

 

Thank you Gloria. I feel it is such an hnour for people like, and all the women who decide to share their stories, that this is a place here on my blog to do so. I am in awe of your strength as you were learning to be a mum too. I do hope all continues to go well for you and your family.

Denyse.

 

Social Media:

Twitter: https://twitter.com/Oh_Glorious_One

Instagram:  https://www.instagram.com/oh_glorious_one/

Information supplied by Gloria which I am very pleased to be able to share…awareness is always an important factor in any health conditions. Thank you.

Since Sean’s diagnosis, I have discovered the Immune Deficiency Foundation Australia’s Facebook page (https://www.facebook.com/ImmuneDeficiencyFoundationAustralia/) and their private group (https://www.facebook.com/groups/217875418231666).  IDFA have provided a fantastic platform for people with Primary Immune Diseases to share knowledge and information and to provide support to each other.
As a point of interest – if anyone is keen to find out more about our involvement with Inner Wheel Australia.  The treatment plan devised by our Oncology and Immunology teams at the Sydney Children’s Hospital involved a stem cell transplant.  Sean received the transplant using stem cells extracted from cord blood, and in the ensuing years, we have been involved with Inner Wheel Australia as Ambassadors for their National Project in Cord Blood Research (https://www.innerwheelaustralia.org.au/national-project).  I have been a keynote speaker at various conferences, and Sean is the face of their national fundraising campaign called “Sean’s Two For Ten”.  The annual campaign was launched this year, and we have agreed to be the face of the campaign for the next 6 years (until Sean is 16).

 

Joining with Natalie here for Weekend Coffee Share.

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