Help Cadence Kick Cancers Ass

$24,104 of $20,000 goal

Raised by 274 people in 6 months
Created January 16, 2019
Fundraising Team
on behalf of Cadence Leipsig
One year ago my sister Cadence was preparing for a life changing month-long Yoga training retreat in Nicaragua, before settling down to have her first child with her new husband, Bill.   During a routine physical before the trip, doctors discovered she was suffering from Chronic Myeloid Leukaemia (CML).

She was forced to cancel her trip and begin treating the Leukaemia with a type of Targeted Oral Chemotherapy (TKI's) that she would need to take, likely for the remainder of her life. Although this was a huge life change, the initial prognosis was great, and she was told that thanks to advanced research in the field, most patients who take these daily oral treatments live a relatively normal life. 

A year has now passed and my sister has been unable to tolerate the TKI treatments due to a haematological intolerance, regardless of multiple dose changes and reductions.  She has been told that she will now need to have a Bone Marrow transplant in order to survive.

The Bone Marrow transplant will require high-dose Chemotherapy and radiation in order to kill her existing bone marrow in preparation for the transplant. The procedure will see her in the hospital for approximately 4-8 weeks, and she will need 3-12 months of recovery time to be back to her normal self.

There are many risks associated with this procedure, including a high risk of Infection from low immune system, and rejection of the transplant. She will also no longer be able to have children, and will need to preserve her fertility.

She has been lucky enough to locate a donor match for this procedure, and is beginning consultations and transplant classes next week to prepare for this life-changing procedure.  

My sister is incredibly talented, funny, loving and the kindest woman you will meet. She is a loving daughter and wife, and the best auntie. She'd drop anything to help you if you needed it. She has faced this challenge with grace and resolve, never letting it get her down, no matter what happens. All I want is for her to be able to go into and through her treatment without having to worry about the day to day things - groceries, etc. I want her husband to be able to come and visit her without worrying about those things either. 

My sister is unbreakable, and I need your help to make sure it stays that way. She has so much more to do on this earth. <3
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Hey Guys,

It’s extremely hard to continue to ask for help, but I still need your help.

When we initially started the campaign, I had no idea what to expect in terms of what we would need in any way. I am absolutely blown away by the amount of support we have received so far, and it was extremely difficult to accept the amount of love you have all shown me. I am forever grateful.

As my husband and I learn more about the process, the risks, the extent of recovery time and the reality that my life will change forever, we’ve realized and accepted how much help we will truly need from the community around us, emotionally, spiritually and financially to weather this journey. For those of you that have already helped out in one way or another, My family and I want to thank you again from the bottom of our hearts, and let you know how much we truly appreciate you helping us in this difficult time. 

While my life feels out of control right now, I have found peace in learning as much as I can about this process. It not only helps me feel like I am taking control a little bit, but I can better understand this journey, communicate more clearly with my medical team and also with my family and friends who are trying to understand what I am going through.

Here are some 'fun facts' I have learned that I wanted to share with you, to help create a better understanding of what everything to do with CML, My treatments so far, and the transplant Process. 

Chronic Myeloid Leukaemia (CML):

CML is a cancer of the blood and bone marrow. CML is thought happen when an acquired mutation (or change) in one or more of the genes that normally control the growth and development of blood cells happens. This change results in abnormal growth.

Most people diagnosed with CML have the genetic mutation identified as the ‘Philadelphia (PH) Chromosome’. This happens when a translocation occurs between sections of the 9th and 22nd chromsome. (Essentially pieces of each break off and switch places with each other. It’s like musical chairs for genes. Fun!)

This new PH+ chromosome produces an overactive, abnormal enzyme (part of a group of enzymes called tyrosine kinases) called bcr-abl. This enzyme signals the cell to divide repeatedly which leads to an excess of leukaemic cells in the blood and bone marrow.

Current Traditional Treatment for CML:

CML in the Chronic Phase (What I was diagnosed with) is typically treated with a drug called a ‘Tyrosine Kinase Inhibitor (TKI)’. These drugs are designed to target mainly the ph+ cells in your blood and bone marrow, and stop the signal they are releasing that causes their excess replication. This causes them to resume a normal cell timeline, and eventually die.

As the PH+ cells begin to die off, your bone marrow slowly begins to work normally again, after being overwhelmed by the overgrowth of the leukaemic cells. Although TKI’s are not yet considered curative, Once your counts return to normal, if you reach all your milestones and continue daily TKI treatment for life, you essentially return to a normal-ish life. (I say ‘Normal-ish’, because all my CML friends understand that although you return to your life, the drugs definitely change your every day experiences!)

Why TKI Treatment didn’t work for me:

In many cases where TKI Therapy is discontinued, it is because the person has either developed a resistance to the drug by acquiring further mutations, or because they have severe side effects that make taking the drug intolerable. 

Neither of those things were my problem.

In my case, we were able to eventually determine over the course of the last year after missing every milestone, that my bone marrow never resumed normal activity after beginning treatment. This essentially meant that I had such a minimal amount of Non-PH+ cells left, that taking enough drugs to suppress the PH+ cells via TKI treatment would suppress ALL of my blood activity and kill me. That’s what led to here- A Bone Marrow transplant!

What Kind of Transplant Am I Having? What the Hell is it anyways?:

I’m having an allogenic bone marrow transplant. It is considered the only curative option for CML and the only way to do it, is to remove all PH+ blood, stem and marrow cells from my body. A bone marrow transplant is *exactly* as crazy as it sounds. It is different from an organ transplant in the sense that the organ is in your bones, so instead of removing it and replacing it with someone else’s, we will chemically kill it with a very heavy dose of chemotherapy, then replace it with someone else’s.

Bone Marrow Transplants are measured in +/- days. You check into the hospital around day -6 or day -5 to have your chemo. Over the next few days the chemo begins to take effect and your marrow begins to die. Your blood counts begin to decline as you head towards day ‘Zero’, and on day ‘Zero’ you receive an infusion of donor cells that are meant to rescue and repair your body. Many people celebrate their Day Zero as a re-birth or new birthday, as the chemo is essentially designed to kill you, and the transplant is literally meant to save your life. Over the coming weeks, as the engraftment of your donor cells takes place (somewhere around day +11) and your new marrow and blood system forms, you literally become a genetically new person. It’s some serious sci-fi shit.

Because this is such a huge and crazy process, there are a ton of risks. Mainly toxic effects from the chemotherapy, Risks of infection because of repressed immune system, rejection of the transplant, or graft versus host disease (which is a chronic from of transplant rejection). They told me the approximate survival rate was 50%. Approximately 25% of people relapse. I was told that without a transplant, already a year into an uncontrolled state of CML, I could expect to live maybe 2-3 more years, but with the risk of going into accelerated stage or blast crisis at any time.

Then what?:

After I am released from the hospital which will be 4-6 weeks after day zero, we will be required to rent a unit close to the hospital for a minimum of 60 days, where I will recover in isolation with a care-taker and will not be allowed to go out in public places.

It may take up to year for my body to make enough blood, so I may need regular transfusions. I will need to take oral chemotherapy to reduce my immune system’s response to the transplant so that it is not rejected for a year or more and any infection, even minor colds, cuts and cavities can present a life-threatening risk within a very short time span.

I’ve talked to many transplant survivors and all of them have had different but difficult journeys towards their new lives, and in accepting and embracing the differing limitations of their ‘new normals’. Above all, each is grateful to LIVE, and I know that is truly ALL that matters to me at this point.

I am honoured to have lived such an amazing life so far, and I truly look forward to Day ZERO and to my second life, so I can live my best life, a second fucking time. Who else gets to say they lived two damn lives?! 

Thank you to everyone who has supported me, I look forward to making you proud and loving you back as hard as you have loved me in this life, and in the next. I also look forward to committing a bunch of felonies before my DNA Changes forever. Just kidding ;) <3
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Hello everyone!

Thank you all so much for your generous and selfless shares, donation and support. You have no idea how much this truly means to me. It’s not just about the financial security this will provide me and my family during this challenging time, but also in truly understanding how much love and support for me exists within my world. I have always struggled to see and love myself the way that others do, so this has been challenging and overwhelming for me to experience but I couldn’t be more grateful and humbled to be so loved. Thank you.

This week I am at Princess Margaret three days in a row for appointments with the transplant team, doctors, counsellors etc as we work towards my Bone Marrow Transplant. My husband is here with me and we are trying to fit in some fun things in between all the seriousness!

Yesterday I met my transplant coordinator (Who I went to high school with- what are the odds, it was so nice to see a friendly face!) and my transplant doctor. I was able to review the process and ask a lot of questions that I still had.

We learned that:

-I will require 24/7 home care for a minimum of 60 days after my release from the hospital and will need to return to the hospital at least twice a week during this time. If I have any complications I will need to stay somewhere closer to the hospital than our home.

-I will have a Hickman line inserted into my chest, and I may have to remove several teeth to prevent possible infection after the chemotherapy.

-Due to the risks, I am required to complete a Will, a Power of Attorney and a medical directive, which is obviously a heavy thought.

-We also discussed the risk that putting off the procedure to preserve my fertility creates, and are struggling to come to terms with what the right decision for us in this regard will be.

Right now it looks like if both the transplant board agree that I am a good candidate and I agree to move forward with the procedure, that it could happen in early March sometime. Of course, I am going to agree to move forward as I understand that It is my only chance to have the rest of my life back.

I am no longer going to increase the goal of my campaign, which was hard enough to set in the first place, because you guys smashed it completely out of the park! I am overwhelmed and blown away by all all the love and support. I feel extremely grateful and lucky to be loved by so many people and all of that love and support has helped me power through these last few days of craziness.

I AM however, going to share it one last time. I know there are people who still would like to help, and after learning more about the procedure and the realities of it I realize that I may need a lot more help than we initially thought. Please consider sharing if you can!

If you have shared, contributed, or messaged me with your love or kept me in your prayers - I thank you from the bottom of my heart. ❤️ I am ready to crush this thing!!!
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I tried to do a video update, but kinda looked like a basket case so I'm writing this instead. It was a good basket case though! A very grateful basket case with all the feels. I hope you'll understand.

It is very hard for me to express how I'm feeling right now because the words gratitude, love, overwhelmed and shocked just don't seem to quite fit. They don't feel big enough. I am forever appreciative. The messages of love, positivity and power have been such an uplifting feeling of strength. A year of living in limbo has been intense and I truly feel like my cup hasn't just been refilled with all these good vibes, it's flowing over. Literally. Into huge bouts of all the feels tears- but it is making me so happy and so ready to fight through this last chapter and move forward with my life.

My husband and I don't really know what we need, or how things will go, and we find it very hard to accept other people's financial help. We want you to know we appreciate it so much, and *Hope* that you are cool with us donating anything not directly used during my treatment to Hearth Place Cancer Support House and CML Network Canada, who have been huge supports to my throughout this journey, and all for free.

It is hard to ask any more of any of you, but I humbly have to other requests that I hope you will consider.

I was lucky enough to find a donor for this procedure but the sad reality is that many people still die waiting for a transplant match. Being a Bone Marrow Donor is not an overly invasive procedure and you can be back to work within a day or so. You can save someone's whole life, with one or two days of your own. That's a super power I highly encourage anyone who can, to use! If you are 35 and under please consider visiting www.Onematch.ca to become a registered Bone marrow and stem cell donor.

If you are in college or university, I encourage you to ask your student council to help organize a donor drive. If you are over the age for donation, I ask that you please consider donating blood to Canadian blood services, as many people during their treatments require blood transfusions.

Again, I am just in shock, and really struggling with how to put into words how I am feeling, but -

Thank you so very much from the bottom of my heart.
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Intended use of donated funds:

Gas, hotels and parking at Princess Margaret for herself and her husband during treatment, procedure and recovery. This will also go towards the cost of nurse home care visits following her transplant.

Cadence’s husband owns his own business and struggles to take time off without the business or family finances suffering. This will help cover any bills that they struggle to pay due to his absence from work, and give them both a peace of mind knowing he can visit any time.

Cadence is interested in complementary naturopathic supportive care during her treatment and transplant. This is not covered by OHIP and can become costly.

Additionally she would like to preserve her fertility and only part of this cost is covered by the government.
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$24,104 of $20,000 goal

Raised by 274 people in 6 months
Created January 16, 2019
Fundraising Team
on behalf of Cadence Leipsig
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