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!!!!!!!

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3 thoughts on “The Next Chapter Begins!

  1. Just wanted to say thank you for sharing your (well, really Bronwyn’s) story. I am also a cancer mom, my 3 year old daughter has leukemia (ALL) and is urgently in treatment. I enjoy reading your posts and I am very happy that Bronwyn will now be starting the process to be put on the transplant list. Good luck with everything!

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