The Good
In these days without kids to look after, I'm trying to enjoy the freedom and flexibility it affords me. Yesterday was a day I was happy to have that flexibility to stick around MDA after my morning radiation.
A family had raised over $80K through a scavenger hunt event hosted by the IBC Network called the "Hunt for Hope". It was a pleasure speaking with several of the family members, many of whom reminded me of my "old life"- dual career families, young children, well dressed, polished, and poised. I, on the other hand, was just thankful I decided to put on actual pants that morning and not roll into MDA in my PJs (com'n, don't judge me, I'm there for a total of 5 minutes, and it is at 6:30am, you'd do the same thing....right??).
The President of MDA, Dr. Ronald DePinho, and the head of the IBC MDA Clinic, Dr. Naoto Ueno, were there to accept the check from the IBC Network. Dr. DePinho talked about how IBC has historically been an "orphaned disease", meaning that in the midst of tremendous financial resources going towards breast cancer research (for example, in 2012, National Cancer Institute alone spent $600M on breast cancer research), very little to none of the resources have gone to IBC.
I had an opportunity to shake the president's hand, which was a real honor. I've been SO pleased with the level of care I have received at this institution and have been so impressed with the commitment of the employees to the institute's vision of ending cancer.
If I had known I was going to be meeting the MDA President, I might have worn a fake boob, or at least put on makeup. Still, if you're going to meet the president of any institution as a scrubby cancer patient, the president of MDA is probably the most forgiving.
The Worst
After an encouraging morning of a new IBC study getting funded, that afternoon I was jolted back to the harsh reality of inflammatory breast cancer.
My facebook feed was filled with sad messages after the online IBC community received a tough blow. Kore Borman, a wife and mom, passed away at 37 leaving two young boys behind. Her story is much like my own- diagnosed Stage 3 IBC, triple negative, went through treatments and was "No Evidence of Disease". A few months later, she had a seizure after the cancer had begun metastasizing to her brain. She ultimately died from from the cancer in her lungs. All of this, less than three years after her diagnosis.
It is hard to accept that this is most likely my fate as well. I want a different outcome. I'm going to do my best to try different treatments and trials, but ultimately, I have no power to control the spread of my disease. I know God has the power to heal me and grant me a long life with my children, but that doesn't mean that He necessarily will.
Other IBC sisters change their facebook profile picture to a pink angel when a sister passes away. I think I will begin doing this. I hope this isn't too depressing for people, but it is the reality of the disease I have been given.
My Goal
Previous to yesterday, the largest amount raised by a single IBC sister was $40,000. Now it is up to $83,000. I want to be the largest fundraiser ever for IBC research (who is surprised?). We raised $13K over Christmas time, so that is a good start. Watch in the coming months and years - with your help, I want to fund many IBC studies.
No more young mothers should have to face death so soon. We can't let this orphaned disease create any more motherless children. We must find answers, and we must find them soon.
In these days without kids to look after, I'm trying to enjoy the freedom and flexibility it affords me. Yesterday was a day I was happy to have that flexibility to stick around MDA after my morning radiation.
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| One-boobed Ashleigh! |
I had an opportunity to shake the president's hand, which was a real honor. I've been SO pleased with the level of care I have received at this institution and have been so impressed with the commitment of the employees to the institute's vision of ending cancer.
If I had known I was going to be meeting the MDA President, I might have worn a fake boob, or at least put on makeup. Still, if you're going to meet the president of any institution as a scrubby cancer patient, the president of MDA is probably the most forgiving.
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| Before & After |
After an encouraging morning of a new IBC study getting funded, that afternoon I was jolted back to the harsh reality of inflammatory breast cancer.
My facebook feed was filled with sad messages after the online IBC community received a tough blow. Kore Borman, a wife and mom, passed away at 37 leaving two young boys behind. Her story is much like my own- diagnosed Stage 3 IBC, triple negative, went through treatments and was "No Evidence of Disease". A few months later, she had a seizure after the cancer had begun metastasizing to her brain. She ultimately died from from the cancer in her lungs. All of this, less than three years after her diagnosis.
It is hard to accept that this is most likely my fate as well. I want a different outcome. I'm going to do my best to try different treatments and trials, but ultimately, I have no power to control the spread of my disease. I know God has the power to heal me and grant me a long life with my children, but that doesn't mean that He necessarily will.Other IBC sisters change their facebook profile picture to a pink angel when a sister passes away. I think I will begin doing this. I hope this isn't too depressing for people, but it is the reality of the disease I have been given.
My Goal
Previous to yesterday, the largest amount raised by a single IBC sister was $40,000. Now it is up to $83,000. I want to be the largest fundraiser ever for IBC research (who is surprised?). We raised $13K over Christmas time, so that is a good start. Watch in the coming months and years - with your help, I want to fund many IBC studies.
No more young mothers should have to face death so soon. We can't let this orphaned disease create any more motherless children. We must find answers, and we must find them soon.
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| David |
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| Noah |
Uncontrollable tears.....for you....and AMAZING young woman, followed by prayers.
ReplyDeleteFather God, we don't understand this loss, and so we sit with you, cling to you, cry to you, and hold on to the only hope that we can when we see children losing their mom so young, a husband losing his partner. We cling to the hope that you alone can give us, that our perspective of this world is so small in compared to eternity with you. We pray the peace of your presence on this family and all whose lives are touched by this earthly loss. In your name Jesus we pray, Amen.
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