I wasn’t even sure if I should write this post, it has been sitting in my drafts for some time. You see, it’s not Disney focused – and that’s why people follow me, for Disney stuff. This is about my life – my real life outside of Pixie Dust Fan. But the real life has impacted the Disney life, and I feel like I need to share what’s going on. I forgot to publish my podcast, I’m missing emails and messages and I keep getting asked “when is your next trip?”.
I haven’t been to a Disney park in 5 months, which is a LONG time for me because I promised myself after covid I would go as often as I could. As soon as that border opened last year I went 3 times in 4 months, I had missed my happy place SO MUCH that I would never take it for granted again. And then, my world turned upside down.
2 years ago as Covid had begun, my sister was diagnosed with breast cancer. Within days she had surgery and then started a long haul of chemo and radiation. She came through it well and was cancer free by the fall. In fact she was well enough to join me for my birthday trip in October and our D23 event in November. She needed a scooter and tired easily – but it was nice to have her back in HER happy place. My sister Becky and I have been doing Disney trips since I was a little girl – so it was amazing to be back in Walt Disney World together again.
After the D23 event in November it was time to start thinking about the next trip. We had cancelled our May Disney Cruise from Hawaii because we didn’t think it was smart with her recent health issues to be out at sea for so many days. Maybe we should stick to land for a bit.
Mid December Becky went for her booster shot and her maintenance treatment for her breast cancer. They did her blood work and all was normal.
7 days later we were in the Emergency department at the local hospital because she couldn’t breathe. Of course the concern was Covid – but they quickly ruled that out.
They did blood tests and said “it could be a clot in her lung, or it might be Leukemia”.
Say what? Huh? Isn’t Leukemia Cancer? She already had her share – you must be mistaken.
Within 24 hours Becky was on chemo pills to reduce the amount of white blood cells in her body. Normal range was 4-11 and Becky had over 100. Thanks to a quick thinking Doctor in the emergency, the pills started working to hold off the spread and she was transferred to The Princess Margaret Cancer Centre.
If you don’t know, the Princess Margaret Cancer Centre is a scientific research centre and a teaching hospital in Toronto, it’s one of the best in the world. The Doctors and Nurses here could not have been more kind to us. We didn’t really know anything about Leukemia except that it was a blood cancer. Everything was explained to us and they diagnosed her with AML – acute myeloid leukemia (AML). Given her blood work was normal the WEEK before the symptoms started, we knew it had been caught early. They were very direct with us, if we do nothing she will be gone in months. We had to start chemo.
I say ‘we’ a lot because as a family I feel like we are all going through it. While she has the hard part of doing the treatment on her body, we have the job of being there, being positive and supportive and doing whatever is necessary. Because of Covid we were limited to 2 visitors allowed for her entire stay, so my oldest sister Carol and I were the designated visitors. We made sure one of us were there every day cheering her on.
Her chemo started on Christmas Day – we liked to joke it was her present. We decorated her room with a few of her Disney popcorn buckets to bring a little Christmas cheer. She was in the hospital for 6 weeks recovering. I know more about white blood cells, platelets and neutrophils than I ever wanted to. I sign in to her hospital charts in the morning to see how her counts are doing and wait patiently for them to recover. Of course there is a family group text where we share the counts and updates on her progress. The rest of the family feel so helpless when she’s in the hospital because they can’t do anything to support her.
The good news is that she responded well to the treatment. There were some bumps along the way – heart rate off the charts, a stint or two in urgent care, Covid exposure and some other nerve wracking moments but she came through. She got to come home for a bit and celebrated her son’s birthday and Christmas all in one day. Then it was another round of chemo and back home to recover again. Lots of doctor appointments and visits to the hospital 2-3 times per week for blood tests and transfusions. I am so thankful that our sister and brother in law are retired and could take her to all of her appointments so I didn’t need to take extra time off of work. They have been amazing.
After all of that treatment they confirmed no leukemia in her blood (YAY!!). The only problem is that it will come back. Many people manage their leukemia with ongoing chemo to try and stay in remission as long as possible. Some are strong enough to get a bone marrow transplant. In the most basic terms the transplant works by wiping out the patients cells and immune system and then the donated marrow generates all new cells that don’t have leukemia in them. One of the doctors told Becky that chemo is like rebooting your computer where a transplant is a new hard drive. Please remember I’m not a doctor and don’t even play one on TV – this is my basic understanding of it all.
Based on testing, Becky was not immediately approved for transplant because her heart was damaged by all the other chemos. It’s crazy to think that she has ‘treatment related leukemia’ from her breast cancer and now her heart is an issue because of the leukemia treatments. After the cardiologist did an echocardiogram to confirm no blockages they gave her meds that got her heart in a good enough spot to move forward with transplant.
They found 2 donor matches for her in the world, but wanted to test me. It’s amazing she even had matches, I heard it can be difficult to find. I was tested (and if you know me, needles and blood are my biggest fear) and 17 vials of blood later I was a perfect match. The doctors had to decide if I was suitable given my age (apparently old cells aren’t as good!) but they cleared me for donation.
My sister was admitted to the transplant ward in the Princess Margaret Cancer Centre. She got 4 days of chemo and then a full body radiation to prepare her for the new marrow. There are so many risks and things that could go wrong and the doctors have to tell us everything so we are prepared for the worst. Her body can reject my cells, my cells can attack her body – it’s so scary but we are all doing our best to stay positive. Becky is tougher than any of us ever gave her credit for in the past, I’m so amazed how well she’s done during all of this. If you had told me 2 years ago that she would get through all this as well as she has, I wouldn’t have believed you.
For my part in the transplant process I had to give myself 2 needles per day for 4 days (yes, I gave them to myself and didn’t faint – I’m proud of me!). The side effects hit me pretty hard and I was out for the count for a few days with headaches and pain. Apparently the injections stimulate marrow production and then it can’t all fit in your bones so it spills out in to your blood (that’s the technical explanation I have to offer). Then they hook me up to a machine that takes the blood out of one arm and pulls the marrow out, and then puts the rest of the blood back in the other arm. It’s amazing technology when you think about it.
As I post this it’s the day after the transplant. I got all hooked up in the morning and they took out all the cells they needed and then some. Apparently they needed 4 million and I gave them 7 – I like to be thorough! I watched as the runner picked up the marrow and my sister Carol sent me a picture from Becky’s room when it arrived there a short time later. It didn’t take long before the transplant was done and they all wished her a “happy birthday”. It’s a whole new immune system so many celebrate it as a new birth day.
Now that the transplant is done she can focus on getting stronger every day. It’s a long recovery, but I know she can do it. I keep teasing her I’ve given her some of our Mum’s tough stock via the marrow to help her.
So that is my story of why I haven’t been to Disney and I’ve been so scattered. I decided to share what is going on because I was getting messages from you all that I really couldn’t answer. This is my reality and it has been difficult feeling like I was keeping a secret. Of course I have Becky’s permission to share her story, but I won’t share everything and I’m not sharing pictures of her as she goes through it.
I appreciate you all so much for following along and keeping the Pixie Dust Fan community going while I have been a bit absent. Once Becky is home and others can help take care of her I will be back in Walt Disney World, I am looking forward to lots of pixie dust myself.
I know great things are ahead, but for now we take it one day at a time. Becky is in the best hospital getting the best care, and she has tons of love and support from her family and friends. She will be ok, I just know it.
Becky is a planner and I’m a last minute gal – I’m looking forward to our future arguments about planning our Disney trips 🙂
If you would like to support the Princess Margaret Cancer Centre – you can find more information here
Please consider donating blood and find out if you can be a match for someone here at bethematch.org.
UPDATE – July 23rd, 2022
It has been a while since I posted this, I can’t believe how long and yet it feels like yesterday that we did the transplant.
It continues to be an incredible journey. Becky handled the transplant well with a few side effects. She had a horrible rash that started on her face and made its way all over. She had mouth sores and fatigue, but only required one blood transfusion. We were told she could be in the hospital 4-6 weeks and she was home in 3.
She was really weak when she got home, they told us the first 100 days would be the hard ones. These are the days when she’s most likely to experience complications and our cells ‘fighting’. She is kept on drugs that suppress her immune system to give mine a chance to ‘grow’. We made sure that she was never left alone and we took turns living with her to make sure someone was always there. We even had some outings to the Butt N Ben – a Scottish Bakery near us.
Lots of appointments, weekly blood tests and hundreds of pills later and she is on day 88! They have started to decrease the immune suppressent and she will be completely off of it by day 100. She is staying on her own now, cooking for herself and even drove her car a short distance! She’s not going to get any speeding tickets any time soon, but it’s nice to see her have some independence back. Her blood test a few weeks ago showed that 97% of her immune system was made up of my cells and there was NO SIGN of any leukemia – RESULT!!
It’s all working the way it should and she is getting her “lines” out next week. (In case you are wondering – it’s a tube that is placed into a vein in her chest and ends in a larger vein just above her heart. This Hickman line was used for long-term to access to her veins it was used to give chemotherapy, intravenous medications, nutrition, and to draw blood for labs.) It’s going to make it so much easier for her to shower once those are out because they need to be covered and can’t get wet. She is not allowed to be in the direct sun anymore so we’re in search of fun long sleeved clothes and bucket hats!
Hopefully at day 100 she can start getting all of her vaccines (childood ones like Measels as well as the Covid vaccine). I think we’ll all feel a bit better once she has some protection. Right now we’re all double masking when we are with her and being extra careful of course. Our priority is getting her back to 100%
I am amazed at how well she has come through this – her body and mind were so much stronger than any of us thought. She’s still got to build her strength back, but she’s on the right path and I know she will do it.
Thank you to everyone that has reached out to ask and send your thoughts – we both appreciate it more than you know.