My Daughter's 50% Chance of Survival x3
My daughter Arianna is my miracle. She has fought so many health battles in her life and she is amazingly still here with me today. This is even though I have been told on two separate occasions that she only had a 50% or less chance of survival. And actually I should have been told this 3 times, for 3 different reasons!
The First Time
The first time I was told this was actually half way through my pregnancy. This was just after the Doctor told us she would be born with a major heart defect (Hypoplastic Left Heart) which meant that the left side of her heart would never really develop. She went into open heart surgery (her first) when she wasn't even a full 24 hrs old! She had the second stage heart repair done when she was just 6 months old. The third and last one was supposed to take place when she was 2 yrs old. But it was delayed when something more important came up.
The Second Time
What could be more important you ask? Yep, reason number 2, otherwise known as cancer. At 18 months old she was diagnosed with Neuroblastoma Cancer. Due to her heart defect the Doctors weren't really sure what her odds were. If it was an intermediate case they figured it would be about a 50% chance of survival. But if the cancer had spread outside of her belly than they said there would be little to no hope! It had spread. Thankfully it was just a small spot by her left collarbone so that put her odds somewhere between the 50% and no hope. Over the next 6 months she went through 8 rounds of chemo and experienced complications such as high blood pressure, infections, blood clots and even seizures. After her chemo was done she had a debulking surgery to remove as much of the remaining tumour as was safe. She still has some tumour in her belly but thankfully it is no longer cancerous.
The Third Time
The third stage heart repair took place when she was 4 years old. All went well, but not long after she was diagnosed with Protein-Losing Enteropathy. This is a rare complication of the last stage heart repair. This condition allows some protein to pass through the body without being absorbed. There is one particular protein (albumin) which is of special importance. It makes your blood act like a sponge to hold fluid in your veins. When this protein gets low the water leaks out and pools in other areas of the body. When it gets bad she swells up and her belly gets huge from all the extra water. It creates pressure on the organs and will start to pool in the lungs as well. The doc said that this was one diagnosis that doctors hated because it was so hard to control. They didn't give me a survival rate this time. It wasn't until a couple years later when I was looking it up online that I found out that 50% of the people that have this problem, die from it. Which makes this the third time.
Wait - The Fourth Time?
As Arianna got older she started having more problems with this condition. After her lungs started filling with water she had to start getting albumen transfusions every week. That, and she went on the transplant list for a new heart. You see, since this was a complication of her last heart surgery, a heart transplant can sometimes fix the issue. Now you are probably confused, thinking that we already went over the three reasons. But guess what, Heart transplants have developed enough and become safe enough that the odds aren't that bad anymore. They are not wonderful but they are better than 50% survival. So this one doesn't actually make the list.
After nearly a year on the waiting list she got her heart transplant at 11 years old. She and I spent three months in Edmonton afterward so that the doctors could keep an eye on her. Did it fix her protein problem? Not exactly, it helped and made it manageable again, but it didn't go away completely. After the transplant she had issues with her immune system and the docs started giving her Intravenous immunoglobulin (IVIG). At first they said she would only need it a few times and then she would be done with it. However now it looks like it will be a lifelong thing. This means that every month she spends roughly 16 hrs (on two separate days) in the hospital getting transfusions.
Why So Many Issues
You might be wondering how one kid could have so many different health issues. After all, we have caused many nurses and doctors jaws to drop while going over her medical history. And sometimes I feel like people don't believe me, that this story is just too unbelievable to actually be true. But it is. Recently we found out about another diagnosis, called Jacobsen syndrome. As it turns out part of Ariannas DNA is messed up, and she is missing several genes in one of her chromosomes. This is what is responsible for so many of the problems that she has had. It is also responsible for many other problems that she has (non life threatening) that I have not listed here for privacy reasons.
Arianna is 19 years old at the time of writing this and as I said before, she is my miracle. She has had a total of 7 surgeries and 8 rounds of chemo. She was born with a major heart defect, had cancer, has problems absorbing protein, and has had a heart transplant. She has had over 1000 needle pokes in her life. She also has many other issues that also require my attention even though she is technically an adult.
Help Me Give Back
So, given all this you may understand how my daughter and her health issues are such a big part of who I am today. I am very grateful for the help that we have received along the way from different people and organizations.
Because of this I am donating 10% from every online sale I make from November 15th to December 31st. Please help me to give back, by making a purchase with:
Donations from this event will go to
Telemiracle and Make a Wish Canada.
I would also like to offer a huge heartfelt Thank-You to the following people and organizations that have been there for us when we needed it:
- Karen Even -otherwise known as Grammy. You have been such an incredible support person for both Arianna and myself. Thank you for your countless days spent with us at the hospital.
- Havik Clotheirs in Regina Sk -made a very generous donation to the family before Ariannas transplant.
- Hoffart Services -also made a very generous donation to the family before Ariannas transplant.
- Lakeview Elementary School and staff -organized a fundraiser for Arianna to get her an ipad, crafts, etc. to keep her occupied and happy as she recovered from her transplant.
- Ronald McDonald House -gave us a place to call home for three months while the transplant doctors kept her close to keep an eye on her.
- Telemiracle -gave us money to help make ends meet while we were in Edmonton.
- Make a Wish Canada -Arianna finally used her wish in 2017. Arianna and I, as well as her step-sister and step-Dad got to go to Florida for a week. We had an absolute blast at Universal Studios, Disney World, and Sea World.