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March 2018:
As many of you know Maegan was diagnosed with Cancer in March 2017, just after turning 40. Last year has brought us a lot of trials as Maegan has gone through treatment to head off the disease (then stage 2b TNBC). Her path looked promising and prognosis manageable. During Maegan's last week of a 6 week radiation treatment to wrap up everything she began to feel hip pain. At first we didn't think anything of it (tendon) but over the weeks it turned into an inability to walk and complete imobilization. CT scans showed her TNBC had metastasized to her bone in her hips, lower back, and femur. She was diagnosed as stage 4. (they suspect a few cells got out before we ever first went in).
Through December the pain was bad and we managed as best we could. At the time the lesions were all too small to biopsy and we started up a very mild oral chemo drug that you can pretty much be on indefinitely. At the time we were under the impression it would be a long time till any lesions were large enough to biopsy. At the time this was the best possible scenario for a stage 4 patient with TNBC to be in. We heard stories of people surviving in this state for 5-20 years. We were hopeful.
Late december and into January Maegan's platelet counts began to plummit (thrombocytopenia). Further testing showed the Cancer was in her bone marrow. A blood reaction started up (due to the disease in her marrow) called TMA (Thromboitc MicroAngiopathy). The platelets lined up in the arteries and created tiny clots that would slice up her hemoglobin (oxygen carrying cells). It is rare. Her organs were close to shutting down. January 19th she was given a week to live. The team tried a last ditch effort at an IV chemo drug. The only way to resolve the TMA is to tamp the cancer down while you ride out the effects of the TMA. They adminstered an 80% dosage (on the very edge of what her system could handle at the time). This worked magic! It did what it needed to. Two weeks later I (Maegan's husband) got a call that when I came back from FMLA i was getting laid off from work.
From this point on we were Day by Day, Week by Week as we waited for her blood reaction to settle down and begin to stabilize. We sought trials and consulted the SCCA. We needed her blood to completely stabilize before we could get to trials. We sought an immunotherapy drug that showed some success rates in cancer patients that we could adminster alongside her IV chemo she was now on. The insurance company denied it so we worked with the pharmacy to plead a charity case to the manufacturer. The drug costs $10k a dose and you need 2 doses a month. This plea process takes awhile.
We had a trip to Hawaii that we had planned in November to celebrate the completion of initial treatment. This was before we knew what would happen. Maegan was adament we still go so Meagan's mom coordinated the hospital communication so she could get adequate medical attention while we were there. We departed Feb 22nd for 12 days. On day 9 Maegan had to go to the ER for extreme headaches that brought her to vomitting. The reaction was starting up again so we rushed a plane back to Washington and cut our trip 2 days short.
On Wednesday, March 7th, after testing and trying to figure out what was causing these extreme headaches Maegan was diagnosed with LC (Leptomeningeal Carcinomatosis). The Cancer had entered her Cerebral Spinal Fluid and was attacking her meningese. That Friday, March 9th, Maegan entered into surgery where they placed an Ommaya Reservoir - a 7cm catheter that goes through her skull, through her brain, and into her ventricle to adminster chemo.
Leptomeningeal Carcinomatosis is a rare and terminal prognosis (although there have been a few cases of recovery, stability, remission). The manufacturer denied the charity claim for the immunotherapy because of the LC diagnosis.
Maegan is in good spirits as she continues to undergo both intravenous and intrathecal chemo treatments to get everything under control.
Last year brought a slew of tragedy to our family. In July my sister's house burnt down in the middle of the night. Maegan and I lost our 9 year old Niece and my brother-in-law, who ran back into the house to try and get her, suffered 3rd degree burns over 55% of his body. He was in a coma for 2 months and they lost everything. Maegan lost a grandmother and her Mother (Naomi) had some serious medical issues she needed to surgically address. And now a layoff to add to the list.
You never think something like this will happen to you or your family. It's hard to express how difficult this is as a father. I have to watch my life-long companion, best friend, and mother of my children go through such a terrible ordeal. It's difficult knowing that this may be the last few weeks we get with her. That she might not be around to share her magic with the kids and watch them grow as individuals.
It's insane how quickly and unexpectedly things can change. Give your loved ones a squeeze and take a moment to appreciate every day you have with them.
Thank you,
Adam Smith
Maddex Smith-Walling
Aros Smith-Walling
Maegan Walling
----------------------
To assist with Maegan's mounting medical expenses we have set-up a Go Fund Me page to help pay for these expenses. Maegan's step-father (Lance) has set up a "rewards" program at varying donation levels but the real reward is that you have helped a young family in need. Any donation from $1.00 or more is much appreciated.
Reward Program:
Please pick any photo from my website (www.lancekinney.com) or any seen on Lance Kinney's Facebook over the years and Lance Kinney will send you a hand printed image of your choice, just a very small way of extending our Thanks.
-------------------------------
March 2017: (from Maegan)
Some of you know this but many of you don't. On the 3rd of March, I was diagnosed with invasive mammary carcinoma grade 3. Which is just a fancy way of saying breast cancer, aggressive. After all the tests were done and all the doctors appointments, it was determined that I was stage 2B. This was the best outcome we were hoping for because it's curable. It'll be a pretty tough road, five months of aggressive chemotherapy, a double mastectomy, and then radiation to follow for six weeks. But I'm happy for the challenge. Nothing puts your priorities into perspective like the chance of you dying will. What are hair and boobs in the grand scheme of things anyway?! I'll probably loose 20lbs from the surgery alone!
I have an amazing medical team and an even more amazing support team, my family and friends who have been incredibly helpful and solidly in my corner on this fight. I can't tell you what that means to me. My mom has created a Meal Train account for us, as meals have never been our strong suit (unless Mom is visiting and then we're in heaven). This is a bigger job than just one or two people helping.
We have also created this Go Fund Me page for medical bills etc. that are not covered by insurance. Please don't feel obligated to donate anything but if for some reason we do gather more money than we actually need the rest will be re-donated to another family dealing with Cancer.
I had my first round with chemo yesterday. So one down 3 more in this cycle to go! Then I move onto what they tell me is a chemo treatment that's a bit easier. So here's to that!!! Life is a crazy ride but here's to many more years of this beautiful wildness to look forward too!! Wish us luck! I will be writing about all this craziness in a journal of some type online and I'll post that link in the near future for those interested in following along. We wish you and your family an amazing and healthy 2017!
Thanks so much, Maegan
As many of you know Maegan was diagnosed with Cancer in March 2017, just after turning 40. Last year has brought us a lot of trials as Maegan has gone through treatment to head off the disease (then stage 2b TNBC). Her path looked promising and prognosis manageable. During Maegan's last week of a 6 week radiation treatment to wrap up everything she began to feel hip pain. At first we didn't think anything of it (tendon) but over the weeks it turned into an inability to walk and complete imobilization. CT scans showed her TNBC had metastasized to her bone in her hips, lower back, and femur. She was diagnosed as stage 4. (they suspect a few cells got out before we ever first went in).
Through December the pain was bad and we managed as best we could. At the time the lesions were all too small to biopsy and we started up a very mild oral chemo drug that you can pretty much be on indefinitely. At the time we were under the impression it would be a long time till any lesions were large enough to biopsy. At the time this was the best possible scenario for a stage 4 patient with TNBC to be in. We heard stories of people surviving in this state for 5-20 years. We were hopeful.
Late december and into January Maegan's platelet counts began to plummit (thrombocytopenia). Further testing showed the Cancer was in her bone marrow. A blood reaction started up (due to the disease in her marrow) called TMA (Thromboitc MicroAngiopathy). The platelets lined up in the arteries and created tiny clots that would slice up her hemoglobin (oxygen carrying cells). It is rare. Her organs were close to shutting down. January 19th she was given a week to live. The team tried a last ditch effort at an IV chemo drug. The only way to resolve the TMA is to tamp the cancer down while you ride out the effects of the TMA. They adminstered an 80% dosage (on the very edge of what her system could handle at the time). This worked magic! It did what it needed to. Two weeks later I (Maegan's husband) got a call that when I came back from FMLA i was getting laid off from work.
From this point on we were Day by Day, Week by Week as we waited for her blood reaction to settle down and begin to stabilize. We sought trials and consulted the SCCA. We needed her blood to completely stabilize before we could get to trials. We sought an immunotherapy drug that showed some success rates in cancer patients that we could adminster alongside her IV chemo she was now on. The insurance company denied it so we worked with the pharmacy to plead a charity case to the manufacturer. The drug costs $10k a dose and you need 2 doses a month. This plea process takes awhile.
We had a trip to Hawaii that we had planned in November to celebrate the completion of initial treatment. This was before we knew what would happen. Maegan was adament we still go so Meagan's mom coordinated the hospital communication so she could get adequate medical attention while we were there. We departed Feb 22nd for 12 days. On day 9 Maegan had to go to the ER for extreme headaches that brought her to vomitting. The reaction was starting up again so we rushed a plane back to Washington and cut our trip 2 days short.
On Wednesday, March 7th, after testing and trying to figure out what was causing these extreme headaches Maegan was diagnosed with LC (Leptomeningeal Carcinomatosis). The Cancer had entered her Cerebral Spinal Fluid and was attacking her meningese. That Friday, March 9th, Maegan entered into surgery where they placed an Ommaya Reservoir - a 7cm catheter that goes through her skull, through her brain, and into her ventricle to adminster chemo.
Leptomeningeal Carcinomatosis is a rare and terminal prognosis (although there have been a few cases of recovery, stability, remission). The manufacturer denied the charity claim for the immunotherapy because of the LC diagnosis.
Maegan is in good spirits as she continues to undergo both intravenous and intrathecal chemo treatments to get everything under control.
Last year brought a slew of tragedy to our family. In July my sister's house burnt down in the middle of the night. Maegan and I lost our 9 year old Niece and my brother-in-law, who ran back into the house to try and get her, suffered 3rd degree burns over 55% of his body. He was in a coma for 2 months and they lost everything. Maegan lost a grandmother and her Mother (Naomi) had some serious medical issues she needed to surgically address. And now a layoff to add to the list.
You never think something like this will happen to you or your family. It's hard to express how difficult this is as a father. I have to watch my life-long companion, best friend, and mother of my children go through such a terrible ordeal. It's difficult knowing that this may be the last few weeks we get with her. That she might not be around to share her magic with the kids and watch them grow as individuals.
It's insane how quickly and unexpectedly things can change. Give your loved ones a squeeze and take a moment to appreciate every day you have with them.
Thank you,
Adam Smith
Maddex Smith-Walling
Aros Smith-Walling
Maegan Walling
----------------------
To assist with Maegan's mounting medical expenses we have set-up a Go Fund Me page to help pay for these expenses. Maegan's step-father (Lance) has set up a "rewards" program at varying donation levels but the real reward is that you have helped a young family in need. Any donation from $1.00 or more is much appreciated.
Reward Program:
Please pick any photo from my website (www.lancekinney.com) or any seen on Lance Kinney's Facebook over the years and Lance Kinney will send you a hand printed image of your choice, just a very small way of extending our Thanks.
-------------------------------
March 2017: (from Maegan)
Some of you know this but many of you don't. On the 3rd of March, I was diagnosed with invasive mammary carcinoma grade 3. Which is just a fancy way of saying breast cancer, aggressive. After all the tests were done and all the doctors appointments, it was determined that I was stage 2B. This was the best outcome we were hoping for because it's curable. It'll be a pretty tough road, five months of aggressive chemotherapy, a double mastectomy, and then radiation to follow for six weeks. But I'm happy for the challenge. Nothing puts your priorities into perspective like the chance of you dying will. What are hair and boobs in the grand scheme of things anyway?! I'll probably loose 20lbs from the surgery alone!
I have an amazing medical team and an even more amazing support team, my family and friends who have been incredibly helpful and solidly in my corner on this fight. I can't tell you what that means to me. My mom has created a Meal Train account for us, as meals have never been our strong suit (unless Mom is visiting and then we're in heaven). This is a bigger job than just one or two people helping.
We have also created this Go Fund Me page for medical bills etc. that are not covered by insurance. Please don't feel obligated to donate anything but if for some reason we do gather more money than we actually need the rest will be re-donated to another family dealing with Cancer.
I had my first round with chemo yesterday. So one down 3 more in this cycle to go! Then I move onto what they tell me is a chemo treatment that's a bit easier. So here's to that!!! Life is a crazy ride but here's to many more years of this beautiful wildness to look forward too!! Wish us luck! I will be writing about all this craziness in a journal of some type online and I'll post that link in the near future for those interested in following along. We wish you and your family an amazing and healthy 2017!
Thanks so much, Maegan
Organizer and beneficiary
Lance Kinney
Organizer
Kirkland, WA
Maegan Walling
Beneficiary
