Kenny Baggett's Memorial Fund
Kenny Baggett, loving husband and father to 4 children, and elementary school teacher in Jenks, Oklahoma, was diagnosed with Stage IV adenocarcinoma of the lung (NSCLC) in January 2014, at the age of 39. Since he was always a healthy and active sailboat racer who never smoked, this diagnosis came as a shock to everyone. At that time, Kenny was told he had 12 to 18 months to live, even with chemotherapy and radiation.
We had quickly found a genetic mutation in his cancer cells which allowed us to use a targeted oral chemotherapy that was much less toxic to his body. It was wonderful. The cancer responded better than we had hoped for the first 7 months. In the 8th month, Kenny's scans had shown the cancer was no longer decreasing in size, but was becoming less active and most likely still responding to the targeted chemotherapy.
When his next scans were read (at the end of March 2015), the result was jarring: the cancer had mutated and become resistant to his chemotherapy drug, and it was growing and spreading faster than ever in some areas. The cancer had returned to both lungs and had spread up and down Kenny's spine, to several lymph nodes, and throughout his hip bones to the tops of his legs. Where statistics matter, Kenny would be lucky to see the end of this year with his family.
That is where we find ourselves now. Looking at our chemotherapy options, clinical trials, and the huge possibility of traveling for treatment is quite overwhelming. We could not get in with M.D. Anderson last year because they would not accept Kenny's health insurance. (To be fair, they did offer us an optional out-of-pocket plan with a $37,500 deposit before the initial evaluation.) Kenny's last chemo drug, which was mostly covered by insurance, was $20,000 every 3 months. We are urged to consider therapies that would be completely out-of-pocket, and more expensive, at this time.
At this point, we have no other option but to ask for financial help. Most of the treatment options we have will cost us more than a small fortune; and while we continue to work to pay for his treatment, we must also be able to take care of four children, a mortgage, and two dogs. Any donation at all will be most greatly appreciated. Our donation goal is an estimate; like everything in this cancer battle, we have no real idea what the future might hold. Losing is not an option, but winning will surely cost a great deal.
Any amount raised that is not spent on Kenny's care, travel, housing, or the children's basic needs will be donated to advance lung cancer research.
Please help us in any way you can.
--Amanda Baggett, Kenny's extremely lucky wife
Thank you, from the bottom of my broken heart, to all of you who have helped us through these years. Please keep our family in your thoughts.
Kenny's chemo didn't go well. By the time he went in for the chemo, his blood counts were so low that he needed a transfusion the next day. The pneumonia really took its toll on him physically, and he had to have over a liter of fluid drained from around his right lung once a week since the beginning of the month.
Before his last chemo, the oncologist had told us to make sure we had all of our things in order and see how far Kenny wanted to take this fight. He needed to make life-support decisions if he hadn't already.
Our last oncologist appointment was Monday (the 25th). After looking at the lab work and the X-rays, and seeing that Kenny was requiring more oxygen almost daily, the doctor told us that the cancer is spreading faster than the chemotherapy could even work. He called the hospital to get us a private room and we were transported by ambulance so Kenny could be stabilized. We are still here.
Kenny is now on hospice, and we are on a waiting list for Clarehouse. He is comfortable right now, with IV morphine and a lot of oxygen to help him breathe. One of his brothers flew into town yesterday, and we expect the rest of his out-of-state family to be here by tomorrow. The kiddos are visiting every day, and they know what is inevitably going to happen. Kenny says his goodbyes every day.
As much as I'm not, Kenny is ready. He is at peace with it all. It's only the rest of us who can't stop crying. If he had a few weeks, we would be welcoming every visitor who wanted to come. The doctor doesn't think we have that much time.
I know he has already contacted a few people to come visit. And for those very close friends who want to say their farewells, feel free to contact me (or text his phone, since I have it as well).
I am so very sorry to have not posted this sooner. I still can't type through the tears. Thank you all for your love and support throughout this fight. It meant the world to us both.
Why the difficulties? Bacteria and kids-with-sniffles aside, the harsh reality is that his targeted chemo stopped working for him after the first month of treatment. We didn't expect the cancer to mutate so quickly, and we were somewhat blindsided by the test results.
After a 3-day hospital stay, half a dozen tests, and a doctor appointment, we are starting a new chemotherapy today. It's a different type of chemotherapy, one which uses his own immune system to attack and kill the cancer cells. It sounds promising and the clinical trials showed that it was able to improve overall survival time compared to traditional (platinum-based) chemotherapy drugs. Kenny was excited to see a commercial about it this morning.
It's not our last resort by any means; there are many more approved drugs available and dozens more in active clinical trials. We are not giving up hope of finding the one that gets him into remission. We knew from the outset that this would not be an easy course to sail, but we did just celebrate Kenny's 2-year mark in this fight.
Thank you all for keeping us in your thoughts. I will update again as soon as we get some more information.
It's been a very fast month at our house. I hardly know where all the time has gone; it seems it must have escaped by the hour every time I blinked. Things have definitely moved quickly, but in the right direction. After only 4 days of being on the new targeted chemotherapy drug, Kenny's oxygen levels were back to normal without any help whatsoever. He has been off of those oxygen tanks for almost an entire month now -- that's over twice as long as any other time since he was first put on oxygen.
The reason the doctor and I had both suggested this current drug was based on clinical trials. There have been great response rates with Kenny's specific mutation and his first chemo (which we most definitely had), but studies show that a break from the first targeted treatment followed by this second stronger targeted treatment is much more effective. We were both quite confident this would be the right choice while waiting on those new genetic results.
The genetic test panel results came back this week. When the oncologist's nurse called me to discuss both this and Kenny's recent PET scan, she said something which I did not entirely expect. She said that the doctor had decided to just wait until our next regular appointment, the first week of January, to go over these results. I was shocked he was in no hurry to see us.... until the nurse informed me that the results recommended the chemotherapy we had already started. Wonderful news got better when I read his PET scan results and got to compare them to his chest CT from last month.
While the oncologist was very honest in stating the test would have no real clinical significance unless there was something new or dangerous (or entirely unexpected), he had ordered it anyway so we could get a decent baseline for this treatment.
Entirely unexpected is what we got. While there weren't many areas in the body we could compare to a month ago, we did have measurements from the chest and abdomen from both dates. Are you ready for this?
His primary tumor had decreased in size by 75% in less than 30 days. The PET results measured the tumor in millimeters instead of centimeters for the first time since his diagnosis, almost 2 years ago. I cried out of happiness when I read it. In addition, many of the new nodules they had found in November were either "resolved" (not there anymore) or "quite tiny". The activity in all of his tumors had vastly decreased.
There had been a tumor on his left adrenal gland that had been stable, or seemed to be stable, since last June. In November they measured it to be 1.4cm x 1.4cm. On December 9, the tumor was no longer there at all!
We are far from out-of-the-woods, but this is a much-needed upswing in treatment. We still have many areas in the bones we will have to watch closely, and may be looking at additional radiation treatment for some of them. For now, it is a very happy and celebrated way to end the year and begin a new one.
Thank you all for your love and support. I hope to have even more positive news for you all very soon.
I'm not sure you'll see this Amanda I wish I could help you financially. Kenny's story struck home with me. I lost my wonderful husband of 35 years to adnoe carcinoma of the lung. On 12-21-2010. . His spread to his brain. He was only here with us for 10 months after he was diagnosed. It's second to the worst cancer there is small cell carcinoma. I feel your pain. Thankfully our son was grown but it was horrible for our grandson. I hope you have been able to have the strength to go on. You never get over missing them. I've just learned I had to go on without him. Best wishes to you always, Kenny sounded like a wonderful guy.
Continued prayers for you all.