A Tough Cookie! - June 2014

June 20, 2014

The lead-up to winter was somewhat eventful as we all suffered from a stomach bug and Charlie another virus. BUT this virus was too pervasive for her little body. She woke a few weeks ago, tired, weak and with a hideous headache. I knew something wasn’t too good when I had to get her from her room. It wasn’t the usual 5 or 6am wake-up call of “Beck, what are we doing today?” OR “you can get up, I am up!” She had a temperature and according to Doctor Charlotte was officially unfit for school!!! I had made her an appointment at the GP and headed off to take Madeleine to school and have a coffee on the way home; before our doctors’ appointment. Before I could get home she had a seizure and the ambulance was waiting when I rushed down the hill at Daisy Avenue. Rod had administered midazolam but she was still seizing and the paramedics couldn’t stabilise her either. So, the ambulance headed straight for emergency at St George, as the SCH was too far away. It took an emergency paediatric team and another 40 mins in emergency to stabilise her but she was still unresponsive.

Rod and I were taken aback by how large she looked on the bed! It is nearly five years since she was diagnosed and our very little baby girl is now a big 6 ½ year-old. I felt a little sad that she is still going through this heart-breaking medical journey. She went through a gamut of tests and was covered in the usual tubes, drips, etc. Her poor body was truly exhausted; it was a long and full tonic clonic seizure. After a few days in hospital Charlie was still having temperatures up to 42 degrees! She was so sick that she stayed in her hospital bed and hadn’t walked anywhere, except to the bathroom. She was wonky on her feet by the time she got up to go home. Happy to return home, she was still not well enough to return to school but after a few days at home was missing her new routine at St Declan’s. It was a sad week for Rod and I as we really noticed the sadness articulated by Madeleine as she was separated from her baby sister and the sheer fright Charlotte felt when she awoke in hospital all hooked-up to machines, yet again!

Her team was concerned about tumour re-growth and moved forward her MRI and she is back on anti-epileptic meds! Three steps forward and five back!!! We have a few more appointments in hospital and will reassess meds at the end of June when we visit Charlie’s neurologist. Ultimately, the best news was that her MRI was clear! Her ventricles were the same, so her shunt is working and there was no tumour re-growth. Wooohoo!!!

It is amazing how good she feels this week only a few weeks out from being in hospital. She has been reading the Mary has a Brain Tumour picture book that we had read to Madeleine when Charlotte was first diagnosed. You have got to love the reading material in our library. She is well-versed in the terminology of the brain, medical obs and cancerous tumours….pity about the old kindergarten sight words!

Anyway, she is ending the term having survived and thrived through 100 days of kindergarten, remembers some of her high-frequency sight words, received a Bronze Award at assembly, has managed to get through swimming lessons a source of severe anxiety and exhaustion, she is loving ballet, tap and jazz and has worn me out completely! We are thrilled for her – a regular little girl!!!

Love,

Beck and Rod xo

 

A belated update!!!

May 11, 2014

Well, where do I start? Charlotte started kindergarten earlier this year and I am not sure who was more exhausted – her teacher, Rod , myself or Charlotte?! It has been a Baptism of Fire, mostly fantastic but certainly hard work for Charlie. She is doing very well, all things considered, but there are daily challenges after enduring 18 surgeries, 28 rounds of radiation to the brain, 14-months of chemotherapy, over 80 general anaesthetics, seizures, tests, medications and the removal of part of her brain, what can one expect?! There is a distinct brilliance about Charlotte and some challenging deficits – it certainly makes for an interesting human being! She continues to have a great team of people helping her along the way and we are always thankful for that!

Charlie turned six this April and it was another special day! She ate copious amounts of sugar and danced herself silly! It always takes my breath away that she still walks alongside us and for that I am truly grateful. I am writing this message as we approach Mother’s Day and I have included a small reflection about the day and being a mum……

 

…I was reflecting on the celebration of Mother’s Day and was pondering on the dichotomy of feelings that I have regarding the day. There is some sadness when I think of some of my friends and family who celebrate Mother’s Day with a heaviness of heart because their mothers are no longer with them.  A particular sadness is felt when I consider the despair of friends trying to become mums and the despair for one of my dear friends, as she reflects on the loss of her young daughter less than a year ago.  I understand the immense sadness that the day can bring.

I lament the organisation and busyness around purchasing gifts and fitting in time with both sides of my family and I question the commercialism attached to the day. But then I consider the beauty that is Mother’s Day. I consider, an article I just read noting, “Mary who spent her life mediating over son Jesus and his mission. She wanted to understand Jesus’ interior attitude” (Voegtle, p.4), much like we do as mums. We want to understand and guide our children thoughtfully.

I reflect, with gratitude, on the privilege of having two beautiful girls and my amazing mother. My mother has been an exemplar of strength, grace and gratitude. I consider how fulfilled and happy I will be, if I am half the mum she has been to me. I reflect on the somewhat heart-breaking journey that being a mum has been for me and count my blessings daily as I still have my Charlotte with me and watch both my girls continue to grow.

So, here’s to the beauty of Mother’s Day!  Amongst the sadness let there be some solace and within the joy let there be gratitude for the privilege of having a mum, privilege of being a mum and everything else that contributes to marking such a day.

Happy Mother’s Day!

Love,

Beck and Rod xo

 

She did it! - First day at big school

January 30, 2014

There have been many times since I have become a Mum that I have experienced that sheer joy that children bring and the enormous heartache that almost crushes you; I think Shakespeare hit it on the head when he coined the term “bitter sweet” BUT today was just one of those days when I was delighted for Charlotte and all of us. She is well, happy, energetic and doing the same, regular things that kids her age do – starting school! She was so excited to put her uniform on and have her photo taken. Madeleine was suitably proud of her little sister who has really come a long way!

I was feeling really great about the day ahead but sat down last night to read a copy of a letter written by Charlotte’s specialists to assist with gaining some Commonwealth funding for educational access issues – she has a few!!! When I read the letter I burst into tears, the first time in a long time! Reading through the enormity of her journey, even I found it hard to believe that she is where she is today. But as the saying goes; be greatful for the little things and there are many of those.

Charlotte’s Clinical Nurse consultant wrote a beautiful text last night as we were discussing the letter for funding and the day ahead: “A great day! I’’ll have to mark the occasion with you but with David Z and Erica J (Charlotte’s Oncologist and Neurosurgeon) over coffee at our scan meeting tomorrow where Charlie was shown many, many, many times in marvel!!!” We still have a long road ahead but we are always hopeful and grateful!

Love,

Beck and Rod xo

 

In a good place! - November 2014

November 25, 2013

Charlotte’s last MRI was clear and we are currently medication free!!! This is the first time since she was a baby that she is on NO medications. The anti-seizure meds took three-months to wean and have made a significant difference to her overall demeanour. After praising her for her calm and generally good behaviour recently, she replied; “I know my whinges have gone away and I don’t know why?!” She is pretty intuitive and also asked if she would have to take the medication again if she was to have a seizure. Yes!!!

She had transition to school and orientation last week, as well as her ballet concert – what a different end to the year this is for her – compared to last year! She is well, eating a lot, growing a lot and trying really hard to get that working memory going and concentrating on concepts that you and I would probably breeze through. Thank goodness she is a pretty bright little girl otherwise the road ahead would be truly difficult.

Her next MRI is toward the end of January and I just hope that she can start school with all the other kids. She is getting use to the idea of big school, leaving us at home (it has been a long and intense attachment), and entering the world of learning. Things are so different compared to her world in hospital and it takes some talking and coaxing to get her head around this new phase in her life. I am so excited for her that I sometimes feel physically sick. What she has been through is more than most experience in their lifetime and it has shaped a very thoughtful, spirited, insightful and sometimes anxious little girl.

Regards,

Beck and Rod xo

 

Charlie’s Scan - 15 July, 2013

July 15, 2013

It has been quite an anxious week. Whilst we were eager for Charlotte’s scan to be carried out, there has been a considerable amount of trepidation and concern with the potential results. In the last 2 months Charlotte has been suffering, all be it inconsistently, with headaches and discomfort which we believe is as a result of a malfunctioning shunt. At a specific point when it occurred, it happened to be hours before Beck was to speak about “Charlotte’s story” at an undisclosed venue in front of Sydney’s “A List” community in order to raise funds for Sydney Children’s. Fortunately the shunt cleared itself and Beck was able to deliver one of her exceptional speeches at an event that raised over 1 million dollars. On top of the rigors of being a mother, a Sydney Children’s Hospital “Champion” Master Speaker, Rebecca is also completing her Master’s in education. Throughout Charlotte’s journey Rebecca has maintained her master’s degree and sustained HD average (simply remarkable). This is the final year, her most recent assignment was also due in the weeks before Charlotte’s scan and amongst the numerous fundraising obligations, Beck still managed to maintain her HD average with a view to pursuing a doctorate.   

Given the abnormal events happening with the shunt, coupled with the possibility of relapse, it is very difficult not to think and prepare yourself for the dreaded result of the next scan, I constantly find myself preparing for the worst mentally, rationalising one thousand and one possible scenario’s that will present given a bad outcome, yet obviously, always hoping for the best.

Fortunately after the scan that was carried out on Tuesday we received the great news on Thursday that the cancer had not returned. Further discussions with the medical team revealed they would not replace the shunt until its absolute failure, so Charlotte may endure further periods of discomfort before it is replaced. It is with good reason they do not replace the shunt on a whim, as this operation is a high risk procedure, although not in the realm of Charlotte’s medical history!

Charlotte is quite well, if you were to see her she is remarkable, you would not know anything has ever happened.  However in reality she is gruelling and unrelenting to deal with on a daily basis, it is extremely tiresome for Beck to deal with. She does not rationalise well, her concentration is very poor, her moods are viciously extreme, much of this is what one would expect from a frontal lobe disturbance such that Charlotte has endured. In saying that she is an amazingly charming and beautiful girl. It is also very difficult to rationalise discipline between Madeleine and Charlotte and withhold a balance of equity given Charlie’s different requirements.

It is with trepidation that I look to our/Charlotte’s future. Fortunately she has a mother who is well versed through her studies to understand the complex nature of the brain and I trust will achieve the best possible outcome for Charlotte. The other big advantage is Charlotte’s overwhelming tenacity and determination.

As always, I thank you all for your continued support. I am not very good at replies but I want you to know it is sooooo appreciated,

Kind regards,

Rod and Beck

 

 

 

April 4, 2013 – A Belated Update!

April 9, 2013

It has been a while but I have not forgotten that I am somewhat late in giving you a Charlotte update. Charlie is back at preschool and today is her first whole day; making it a three-day week at preschool. Having worked two days this week, Thursday is Uni. day for me! Charlotte’s last scan, four weeks ago, was still clear and this is our second week of NO hospital appointments or tests. She is doing really well and sometimes I find it hard to really express where she is at and how she really is. These words say it well:

The Book of Hours, Bk1, poem 1, stanza1…Denise Levertov

A certain day became a presence to me;

there it was, confronting me – a sky, air, light:

a being. And before it started to descend

from the height of noon, it leaned over

and struck my shoulder as if with

the flat of a sword, granting me

honour and a task. The day’s blow

rang out, metallic – or it was I, a bell awakened,

and what I heard was my whole self

saying and singing what I knew: I can.

The day, personified and knighting the persona, is our Charlotte. A child that virtually always can. Well, at least she thinks that she can! She does this with virtually no frontal lobe, having endured years of chemical and radiation therapy, and with the remaining part of her brain squashed down toward her brain stem….she is the epitome of what life is about. Having a go and always thinking you can. Furthermore, she does this while she skips and sings towards her next adventure. My hope is that she can stay that way!!!

We have a lot of work to get her ready for school but she is doing quite well. Her educational assessment marks her as age-appropriate in intelligence and she just keeps improving now that she is out of treatment. Charlie has her school enrolment interview on Friday…woohooo! It is, in itself, an enormous milestone! Next week marks her 5th Birthday!!! I always feel a combination of tearful joy and sheer relief that she is able to meet these benchmarks; things that I just expected with Madeleine.

Anyway, we wait now until her next MRI in June and have a number of check-ups ahead – oncology, hearing, opthamology, endocrinology and neurology. So, I will write again soon to fill you in.

Thanks for reading and not forgetting Charlie!

Beck and Rod xo

 

 

 

Acabado, fini, finito , finished, complete!!! - Christmas Eve, 2012

December 25, 2012

I am not sure where to start but Charlotte is finished radiotherapy and I feel really proud of our little girl who has had another massive couple of months. I missed being proud of her in the end-of-year ballet concert, or revel in her preschool Christmas play, or watch her progress in swimming or complete the preschool year BUT I am proud of a little girl who deals with what she does and at the end of a huge day says to her big sister; “let’s go home Madeleine and turn Katie Perry on and I am going to dance!”.

The day began with the girls dressing up for Christmas Eve on the ward. Madeleine went as an angel and Charlotte as a lady beetle! Rod went as surfy Santa and I just wore green and red. We were all excited to be there to watch Charlie finish radio. Rod and I, however, felt quite on edge about the possibility of not having Charlotte’s central line removed. As we went to radiotherapy, the very lovely Dr Orlay (Aunty Ness’ favourite anaesthetic doctor) and Dr Upton realised that Charlotte’s central line op was still tenuous, and despite it not being their responsibility, they did everything in their power to get her a team and theatre space. She had radio and as she came out of recovery she was extremely volatile and aggressive. After six shots of fentanyl (same family as morphine) she settled and they found her a theatre, general surgeon and anaesthetic team to take out the central line. I thought I was going to cry and Rod had a look of sheer relief on his face. Aunty Ness and Madeleine did Ganghem Style up the corridor of the hospital and I taped the whole thing! We really don’t know how to thank those doctors, who really went out of their way to make sure Charlotte did not spend another month with a central line hanging out of her chest. It would have meant no beach, no baths, no pools, regular dressings, the line being flushed in hospital, aggravation of her eczema due to the heat and the bandages and the possibility of infection. We are exceptionally grateful!

So, after anaesthetic, radiation, an hour and a half of emergence delirium, six shots of fentanyl, another anaesthetic and surgery to remove her central line Charlotte returned home to play, dance, visit neighbours for present giving, see the local Christmas lights and carols and squealed with Madeleine as she laid out her Santa sack in anticipation of Christmas morning. She really deserves a gold medal of commendation, bravery and tenacity. Rod and I are exhausted!!!

I could not be happier for Charlotte who yelled; “woohoo” when she looked down to check that the line had gone. It was certainly our amazing Christmas present. Merry Christmas to you all and best wishes for a happy, healthy and peaceful Christmas and New Year. We hope that you have the opportunity to delight in the mystery of Christmas and the beauty of all the things you cannot buy.

There is much love and appreciation to those who have been steadfast and supportive of our journey. We are always grateful for the generosity that befalls our family.

Beck and Rod xo

 

 

 

 

 

ALMOST THERE!!! 20/12/12

December 20, 2012

The past few weeks have been a mixed bag where Charlotte’s recovery from anaesthetic is concerned. We have had some shocking days and some amazingly good ones. So, it continues to be a turbulent time for Charlotte; most of which she does not remember. It is that crazy time of the year where everyone is complaining of being tired. We are really feeling it too! However, I am grateful that Charlotte is doing really well all things considered. She was so good today and felt really well so we went present giving and stopped at the hairdresser for a trim (her first real hair cut). She has lost a lot of hair on both sides of her head but we hide it with her long locks so that she does not really notice. I thought the trim might help to thicken it up and neaten the unruly mass of hair. Charlie was happy as there were braids and glitter by the time the hairdresser had finished.

We are scheduled to complete treatment on Christmas Eve! WOOHOO!! However, it is not certain (a very long story) whether Charlotte will be able to have the operation to have her central line removed that afternoon. Which will mean regular visits to hospital until surgery recommences around the 21 st of January. It essentially means no real holiday for us, no swimming, etc for Charlotte. So, as you can imagine we are a little frustrated. Our fingers and toes are crossed and prayers are flowing….so we are just hoping the stars align also!

Until Monday,

Beck and Rod xo

 

A Good Day for Charlotte

December 4, 2012
It was a smooth running, uneventful and reasonably good day in hospital standards. Charlotte slept well and long, the traffic to the hospital was tolerable, the stars must have aligned during the night, the sun was shining, Charlotte awoke from radiation relatively calm and did not require sedation or any other intervention. Our prayers had been answered. She was only a little cranky and slow to come out of anaesthetic but really great for her. The way it should be!

Thank goodness,

Beck and Rod
 

HALF WAY! – Monday 3 December, 2012

December 3, 2012

Rod and I were so exhausted last week that we weren’t sure how the next three weeks were going to pan-out. I was so tired after hospital just waiting, anticipating, all the possibilities and variables that might arise as part of this journey through treatment. I was so tired when I finished the day that I couldn’t even write a post or a reflection. Sorry! Last week didn’t start too well but by Friday we had finally come up with the best combinations of drugs to get Charlotte through radiation and out the other end with greater ease and less exhaustion; for her and us!!! Today went much the same way and the patience of the few nurses who have been taking Charlotte through the recovery process and the collegiality and collaboration of all the anaesthetic doctors has made a real difference also. We feel relieved.

Charlotte is doing really well through the radiation. She has lots of little issues but still maintains her exuberance for everything and hysterical take on life! She checked herself out in the mirror following her wash this evening (can’t bath with the central line in) and said; “look I have healed well Mum my scar doesn’t look like train tracks anymore!” What a neat little observation… I tried not to laugh hysterically! She fights going to sleep at night. Charlie has an unhealthy aversion to going to bed, which is terribly annoying. Being back in treatment is not helping, despite the fact that radiation should make her really tired????? What is especially frustrating is that we had just got her back into a nice sleeping pattern. We are back to one full night sleep a week. I think Rod and I are in competition for the most tired and haggard looking parents!

We have been enjoying the gracious help of our friends, some amazing cooking by those around us, ongoing support from our families and some hard mornings have been experienced by Vanessa as she has helped us with Charlotte’s episodes out of anaesthesia. Thank you for the kind help and all the messages of support. We are always so very grateful!

Love,

Beck and Rod xo

 
 
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