After labs were done... we found out our baby had leukemia. After four months in the hospital she was able to come home. We were prepared to tackle this beast. We were told she had a favorable type of leukemia pre b A.L.L. We endured several chemos, hospital stays and procedures all seemed great we were almost done with treatment. As her parents we did all we could to make sure she got what she needed. Dad still worked. Mom juggled her in home day care as well as doing odd jobs for baker friends. Then... on her last lumbar puncture toward the end of her 2.5 years of treatment they found her leukemia was back. This time where it had never been before her spinal fluid.
We once again began hospital stays, chemos and procedures. Her cancer was in remission again. She was doing kindergarten via home health through the school that she would ultimately go to... and then she got shingles. Her radiation was put on hold to allow her body to heal from the shingles... and then... she relapsed in her spinal fluid again. As her parents we took the relapse hard but be just worked harder for her. Dad continued to work 9 hour days, mom juggled day care, doctor visits and side jobs.
We were given a few options and chose to try a new innovative study Car-t treatment where her own t cells kill the cancer and the hope is they stay around and kill the cells that turn into her type of leukemia for as long as possible... ideally a year. Bridgette's cancer by the time she received the car-t cells spread into her bone marrow. She received her car-t cells in Los Angles and our family was separated once again. Some how we managed... we worked and juggled. But it worked... she was in remission again! Now the cells needed to stay around for at least a year. They lasted five months. Bridgette had five months of feeling great. She started school. She had best friends in school. She was crazy and full of energy.
We were given the opportunity to get a second infusion of cells instead of doing a transplant. We opted for a second infusion of car-t cells on Thanksgiving of 2017. Once again we juggled life, work, big brother, family and finances to make it happen. Statistically they should have stayed around longer then the first dose. They did not. We just received word that her car-t cells are officially gone. They only lasted a month or so. That means she still has not had the car-t cells for a year.
Bridgette is as I write this still in remission she is feeling great and she has fully recovered her b cells (normal b cells). She is currently cancer free. She is actively in school absorbing as much learning as she can while there. She has energy and no one would know the battle she has fought and the roads she has traveled. The problem is, her car-t cells were not around long enough to be confident her leukemia will not return. Bone marrow transplant is our next option. We have exhausted all our personal resources in the last three years of treatments and travels to Los Angeles. Which is why this go fund me is being created.
Bridgette needs to go to transplant. Sooner rather then later. Transplant success is directly related to if there is disease when transplant occurs. The chances of transplant success and cure are roughly 75% if she goes into transplant without disease. IF we wait.. it drastically decreases... to between 45%-15%. Bone marrow transplant scares us to our core. It is not an easy road... she will require full body radiation (she has as of yet not received any radiation treatments), conditioning chemo to deplete her marrow and it will drain her to her core. She will have medications, co-pays and procedures. She is most likely have side effects. She will have to be kept away from general population for minimum of six months. She will hopefully only be away from home for a month or so, and we are hoping we can do her transplant at our primary oncology care hospital.
We trust our Doctor completely. We know this is not going to be an easy road. None of this journey is easy. We have seen bone marrow transplant do amazing things, be unsuccessful and be detrimental. We can not sit and do nothing, because we know where that will lead us. In our hearts we can not justify continuing to try different studies to avoid transplant just because it scares us. It seems that no matter what choices we make the road always leads us back to transplant. So we must prepare as best we can for what we fear the most. We can not do it alone.
We have spoken to Bridgette she knows it may happen not that will for sure, as we have yet to find her a donor. Her brother is not a match so we will rely on the donor registry. If you haven't registered to be a donor please do... its simple and the act of donating isn't difficult or painful as one might think.
We need your help.
There is no other way to say it. I know many of you have donated before... and I know you hate hearing we need more help. More support financially. We have to be honest we are tired... does that mean we are quitting... HELL NO. But we are tired; she is tired of all this. Her brother is so used to hearing we have to do some treatment the news was not shocking. We all have ptsd of some sort from this journey; but we are strong. She is strong. Its time we confront our fears and truly jump all in. Its time we deal with transplant.
We know Bridgette can do this. She knows she can. We know she can.
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