Olivia Wise’s Last Song

It was all over the news. A teenage girl, dying of inoperable brain cancer, recorded a cover of Katy Perry’s “Roar”. After it went viral Katy Perry, herself, responded with a video message.  We all were so touched by Olivia’s sweet voice. We loved that Katy reached out ……. and then we were all devastated when it was reported that Olivia was gone. Lovely that Katy tweeted about her sorrow at hearing the news. The simple truth about this Simple Girl is Olivia died because of the lack of childhood cancer research. Nothing could be done for her. Her doctors knew her cancer was inoperable from the beginning.

Just days before she died Olivia’s parents posted this video of the song Olivia wrote. I was stunned at the haunting beauty of Olivia’s voice and words. Please listen…..then pass it on. This is the song Katy Perry and the rest of the world need to hear. When you are done listening to Olivia’s last song ask yourself this: How many beautiful children have to die before childhood cancer research becomes a priority?

Please donate to the Liv Wise Fund in Olivia’s name to support research into childhood brain cancer.

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A Wish and a Wig Trade with Karen Gillan

Bronwyn’s Make A Wish Wish

When Bronwyn was first asked what she would like to wish for it was all about Dr. Who. She wanted to go to the Dr. Who Experience in Cardiff, visit filming sites in the area and maybe even the studio. If her treatment had gone according to plan she would have been done in the summer of 2012. She would have been able to travel soon afterward and had her wish. Maybe we would have even been able to meet Matt Smith, Karen Gillan, Arthur Darvill, Alex Kingston or any of the other wonderful people who have had a hand in Dr. Who’s creation! Who knows what would have been possible!

When Bronwyn suffered heart failure her dreams of any future were forgotten for a time. When she survived one of the things we came to realize were no longer possible was Bronwyn’s Wish. It would be quite sometime before she would be able to travel again and there is a real chance once she is able she will be too old to qualify for a Wish. Yes, it is possible to age-out of the Make a Wish program.

There was a day, not to long ago when Sinead announced, “Today Matt Smith filmed his regeneration.” With that statement I knew our last chance to maybe see Matt as the Doctor was gone. Yes, I realize there was a slim chance we would have been able to visit a Dr. Who filming with Matt ….but…..one can dream.

One thing we will strive to do once Bronwyn is well is go to Cardiff and see her wish fulfilled, come what may!

Wig Trade!

On July 12th, 2012, only days after her first steps after open heart surgery, Bronwyn and her sister, Sinead had a remarkable day thanks to the Prom the took place at Sick Kids for all the teen patients. They supplied hair and makeup services and helped with clothes and accessories for those that needed them. Sick Kids is fantastic at going the extra mile!

Bronwyn took a wig sent to her by her cousin, Kiri Butter, to the hairdressers. She went from this:
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 to this:
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And then the makeup took her to this:
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Amy? …..As I was snapping away, capturing the moment, I was stunned at what I saw through my lense. With just a wig and a little makeup Bronwyn was transformed into Amy Pond…. Karen Gillan!

When we got back to Bronwyn’s hospital room I had to take a few pictures of Bronwyn with her poster just to prove the resemblance:
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On July 20th, 2013 Karen Gillan showed up to Comic-Con looking like this:
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and in a surprise move…..
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….ended up like this:
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FANTASTIC!

Now Karen and Bronwyn have something in common: they know that the best part about being bald is at the end of the evening you can take off your hair:

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“Mommy, take off my hair.”

Bonus shots from the Prom: SISTERS!
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Dear Matt Smith, The 11th Doctor:

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Thank-you. Thank-you for entertaining us, for being with us, during the worst hell of our lives. For 22 months now we have been medically displaced, 1,000 miles from home as my 16 y/o daughter first battled cancer, then heart failure caused by the chemo and now lives on the edge of a sword with an electric heart pump [LVAD] as she waits for a heart transplant. Your incarnation of The Doctor, with his whimsy, humour, optimism, hope, childlike playfulness along with the wisdom and deep sorrow that comes with suffering is just what we needed. Throughout the long, heart wrenching months you have looked down on my precious hero from the poster that has been transferred from hospital to hospital to ICU to CCCU to room to room [to room…etc.] to apartment at Ronald McDonald House and now the small apartment we temporarily relocated too in downtown Toronto as this wait for a heart could take another year or two.

Dr. Who has been a constant light through it all. We have watched many seasons over and excitedly waited for new episodes that did not disappoint! We have laughed, cheered, gasped and wept. You made my sick child smile and laugh and distracted her from her pain and misery. I have loved other Doctors but none hold on to my heart like you. To me you are and always will be “the optimist, the hoper of far-flung hopes, the dreamer of improbable dreams.” <—This. This we have in common. During the hellish weeks we were continually told Bronwyn would not live we didn’t believe it. We believed the impossible and the impossible came true. Thank-you for being there. Thank-you for helping us through.

Sincerely: A Grateful Fan

ps: If Bronwyn could have a Make a Wish wish it would have been Dr. Who themed, off to Cardiff for the Dr. Who Experience and maybe even the studio, maybe even a meeting….someday, maybe.

My Doctor Who Story

I remember seeing snippets of Dr. Who as I walked by the TV as a young adult. I was aware of Dr. Who but wasn’t interested in science fiction at the time. [It was Barry that changed my mind on SF when he rented BSG many years ago.] When the show was revised I started watching it. It was good. I liked it but my girls were young [8 and 10] and I was sensitive about them seeing anything too scary. I made it halfway through the second episode and decided Cassandra was too icky [a human stretched out like a buffalo hide] and turned it off. [Yes, I regret it.]

It was a few years later that Sinead reintroduced Dr. Who into our home. She had discovered references to it online [most likely tumbler]. I was sucked right into the 10th Doctor storyline with Rose and soon the girls were making sure I saw every episode of the new series. It wasn’t until Donna entered the scene I became a true fan. [LOVE the Dr. Donna!]

Then it seemed just when I discovered the magic of Dr. Who everything was going to change with a new doctor coming. I don’t remember exactly when I my new obsession started but it was before Matt Smith was chosen. I wasn’t really sure how this was going to work. Being a new fan I didn’t quite understand how the Doctor could change so much and still be the same character. The regeneration scene from the 10th to the 11th left me speechless and concerned that my new favourite show had just been destroyed. I needn’t have worried. I believe the 11th Doctor’s interaction with the child, Amelia Pond, helped a lot to endear him to me so quickly.

I had heard my girls and other fans talk about “my Doctor”. It seemed everyone had one incarnation of the Doctor that they especially liked, one they felt most connected with, a favourite. I didn’t have one…..until Bronwyn’s diagnosis. As I described in my letter above, Matt’s Doctor seemed to have been created just for us, for me.

I generally do not idolize actors, singers, musicians and such. They are just people doing their job to entertain us. I have had the opportunity, during Bronwyn’s health journey, to meet some famous people and although these moments were thrilling they were not emotional or life changing [except when we met Maggie Q for obvious reasons. In case you don’t know she pays our rent while we wait for a heart.]. I can’t think of any famous person whose presence would make me lose it……except for Matt Smith. Such is the connection I feel with his Doctor.

I’ll finish off with something Dr. Who and I have in common. We are both 50. We have both had to reinvent ourselves several times due to life circumstances. We have rolled with the punches and enjoyed our successes. We accept our past and have lived through tragedy but won’t let it hold us back. Our drive, imagination, dreams and optimism will continue to propel us forward into the future. Today I raise a glass to us. I think we are both pretty, damn awesome.

Taken at Easter, 2012, this picture shows the Dr. Who poster collection on Bronwyn’s hospital room wall at the Children’s Hospital in London, ON. She took the shot, from her point of view, in bed. Sinead gave her the large one for her birthday and is the poster that has followed her everywhere and now hangs in the bedroom she shares with her sister in our Toronto apartment. No matter what we were going through the Doctor and Amy were always there, ready to help.558527_10150639086436300_71722662_n

A Family’s Greatest Sadness is our Greatest Fear.

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Click here to learn more about Macie from TheTruth365.

When Bronwyn started treatment I had to sign off on all the chemo drugs used on her. One listed heart failure as a rare side effect. When Bronwyn drew the short straw on that one, only two weeks after her last treatment, we were stunned. In the months since I have learned much more about the treatments given to children and that heart failure is really not that rare. In fact, St. Jude’s discovered that heart issues are quite common in children treated with certain chemo drugs.

Our hearts go out to Macie’s family. I never knew Macie or her family. In fact, I never heard of her before TheTruth365 posted this picture and Macie’s story today yet my heart is broken. I must confess it is hard to see stories like this and not be freaked out as well as destroyed. There is a mix of brokeness for the family of another child taken by heart failure due to chemo and stabbing fear that this actually happens.

To really understand the cruelty of the treatment for childhood cancer that we accept as normal please click on the link and read the comments from other parents who have watched their child damaged by chemo suffer. It’s an eye opener. We need to find better treatments!

Childhood Cancer Survival: The Reality Beyond the 80%

The 80% survival rate for childhood cancer touted by governments and high profile cancer charities feels like a lie to childhood cancer survivors and their families and Rachel’s story tells why. This happens more often than not. The more I hear of medical issues most [as in 98% of] survivors face I feel a twinge of gratefulness that Bronwyn’s only issue is a heart transplant. If the only price she has to pay for cancer is an operation then she will be fine. Logically I know my optimism is naive. The majority of side effects from childhood cancer, called late effects for a reason, happen years later.

Rachel had a few good years before her effects took hold. We have to be thankful for every year, every day, of “good” that we have.

This is why better treatments are needed. Since Rachel’s treatment hardly anything has changed in childhood cancer treatment. Rachel tells the story of so many survivors. This is not the future I want for my child, for your child, for ANY child.

Please click and read: Rachel’s Story as a Childhood Cancer Survivor

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The Next Chapter Begins!

are you ready

2012:

January, 6th: I took Bronwyn to ER to see if the cold she had been battling for 2 months had developed into pneumonia. Her lungs were clear so the ER doctor suggested we follow up with her GP.

January, 11th: After Dr. Bukovy checked her over and found nothing he sent her for routine blood work, just in case….. I love this man.

January, 12th: Dr. Bukovy called me and with a shaken voice he told me Bronwyn needed to come into the hospital the next day to be tested for leukemia.

January, 13th: Bronwyn and I were airlifted from the Health Sciences Center in Thunder Bay to the Children’s Hospital in London, Ontario.

January, 15th: Bronwyn was diagnosed with pediatric acute myeloid leukemia. We were told treatment would take 6 months and Bronwyn would have to stay in the hospital. Life as we knew it stopped completely. Despite the build up I was completely shocked. I was convinced it could not really be cancer, at the worse, mono. I would give everything for it to mono.

February, 23rd: Bronwyn is in remission. This does not mean cancer free. It’s means that less than 3% of Bronwyn’s blood cells were leukemia blast cells. [remission means less than 5%]

April, 30th: Bronwyn’s last day of chemo. Her blood counts rebounded so well after every round she finished two months earlier than expected.

May 11tth: Barry arrives from Thunder Bay. A couple of days of relentless fever caused me enough worry to call him. So glad I did. So glad he came ASAP.

May 13th: “My chest hurts.” The comment that changed the course of Bronwyn’s journey. What followed was a flurry of doctor activity, blood work, echos and other tests.

May 16th: Bronwyn’s heart function deteriorates quickly overnight. She is airlifted to Sick Kids. There we are told she would die. With only 20% heart function and blood counts so low surgery was out of the question. There was no way she would survive.

May 21st: The Shitty Day. We had to tell Bronwyn that the doctors were saying she would not live. We had to help her make end of life decisions. Who would she like to see? What would she like to say? What would she like us to do in her memory? I don’t know what else you could call a 15 y/o having to make these kind of decisions but shitty.

May 30th: One month after her last chemo treatment and we are told for the last time that Bronwyn has hours to days. We are shown a room that she will be moved to to make her as comfortable as possible. It’s the palliative care room.

May 31st: Bronwyn’s blood counts jump well into the normal range over night. We are told she is now eligible for surgery. She will receive an LVAD, a pump inside her heart to force the blood through the left ventricle to the rest of her body. The LVAD is the only heart assist device that can be inside the body for years. Bronwyn will not be eligible for the heart transplant list until 2 years post cancer diagnosis, that means she can’t be listed until Jan. 15th, 2014 and then she has to wait for a heart and that could be 6-12 months, even more. She is never moved into that other room.

June 3rd: VAD DAY! At 2pm Bronwyn had the surgery that would save her life. Four hours later it was done and was a great success.

July 6th: Bronwyn takes her first steps.

August 9th: Bronwyn is the first child to be discharged from Sick Kids with a VAD. [Seven months in the hospital!] A new journey begins outside.

November 29th: Bronwyn is admitted for internal bleeding, one of the side effects of taking blood thinners to prevent blood clots.

December 3rd: Bronwyn undergoes surgery to have one ovary removed. The ovary had a cluster of blood cysts on it that were bleeding. If the cysts were just removed there was a chance that they would return. We all decided it would be best to just get rid of the whole ovary and be done with it. It was a great success!

December 21st: Bronwyn is discharged just in time to enjoy Christmas. Sinead arrived from Thunder Bay for the holiday.  She was living in our house while finishing her last year of high school.

2013:

June, 4th-7th: We travel to Thunder Bay to watch Sinead graduate, with honours! Sinead joined us in Toronto in July. It’s so good to have her with us.

July, 1st: We move out of Ronald McDonald House into an apartment in downtown Toronto. We must stay in Toronto as there is no VAD center in Thunder Bay. Our house there is packed up and put into storage. We no longer have a home.

September, 3rd: Bronwyn becomes the first kid in Ontario to attend public school with a VAD.

October, 9th-15th: Bronwyn gets to visit Thunder Bay one last time before she is put on the transplant list.

November 8th! [Tomorrow!] Bronwyn will finally begin the process to be approved for the heart transplant list! The first step is to be cleared of cancer. Bronwyn will have a bone marrow aspirate at 9am. AML is a nasty cancer that loves to hide and make a comeback but when it does it usually happens in the first year after diagnosis. The chance of relapse drops to about 15% after one year and down to less than 5% after two. Plus, she is having blood work done all the time. Even though the blood work done is not specifically to look for cancer, if there was something happening, it would have showed up in a drastic change in her counts.

So, all I want to know is: ARE YOU READY?!

We are entering a new chapter in Bronwyn’s journey! Once we get the results of this test other tests will be booked. [I’m not sure what has to be done. We find out when we need to know.]

Step one to being listed: Bone Marrow Aspirate! Can’t wait to check this one off!!

Let the Heart Journey begin!!!!!!!