To understand Lolo’s treatment plan a little…..her is the scoop. This is for my sister, my former co-workers in the medical field, and the rest of my family that I haven’t been able to talk to lately. Lolo is on a treatment called FLAG plus neupogen. I am tired so I am not going to try to spell these things correctly now. I will have Dom submit a corrected copy soon. FLAG is used for relapsed leukemia. Don’t read the internet where it says for leukemia with a poor prognosis. That is true, but that doesn’t mean Lolo is going to have a poor prognosis. Usually Leukemia cutis has a poor prognosis. But, we caught hers very early. There are many things we have going on that are in her favor. In fact, her case is so rare, they don’t really know what to make of it, but her team of doctors and the doctors that are specialists in AML that have been consulted around the country feel favorable about the game plan. We know that somewhere in her bone marrow is a cancerous stem cell that has not been in a “cell cycle” or reproducing. It also is resistant or at least somehow made it through her many rounds of chemotherapy when she was 10. It is most excellent that Lolo has been in remission 2 ½ years because her body has recovered and is in really awesome shape. Her volleyball training and my good cooking has paid off. She is fit as a fiddle. That is definitely in her favor. She is also strong emotionally and spiritually. That is very positive for her also.
The most amazing news is that this leukemia has not showed up in any of her other organs or in her bone marrow. There are not other cases of pediatric AML that have presented this way to compare to, that is how rare this is. It is a booget of a case. That being said, I must clear up any confusion about how I feel about Lolo’s oncologist. Even though I was mad as a hornet that Lolo’s leukemia has come back, I certainly was not mad at him. Although I was frustrated that they weren’t concerned when I first brought up her cyst like growth on her leg the 1st and 2nd time I showed it to them, I certainly understand it. I was frustrated, but it certainly does not mean they were negligent. They never have been. They were cautious, but what you need to understand is that the cyst DID NOT REALLY LOOK LIKE LEUKEMIA CUTIS. It bugged me because it was getting bigger, but was still pretty small, but the center of it had a slight bluish tint. In my medical technologist head and all my leukemia classes and board questions, I kept thinking…..could this be a chloroma???? It actually didn’t really look like it. They are almost never found by themselves. Usually if there is a chloroma, the blood counts show some sign of leukemia or other symptom of leukemia. Lolo was having lower back pain, but she is a very active volleyball player. They all have aches and pains. When I took her to the pediatrician, Dr. Woodford agreed to look at it just because I didn’t feel right about it. The dermatologist was a new dermatologist and didn’t feel right about her history, but didn’t think it would turn out positive. Therefore, what I am saying is Dr. Coulter still has our complete trust. He didn’t miss it. He wouldn’t have liked it next time she saw him and would have followed through the same way. The bottom line is this is a weird fluke and I have complete confidence in her doctor and the team that is behind him. They are simply the best. She loves them all and so do we…..just to straighten all of that out.
So, the treatment: The neupogen is to stimulate this cancer stem cell to start reproducing. If we give her the big guns FLAG treatment, but the stem cycle isn’t reproducing, we don’t have as much luck flushing it out. So, it is like finding a hidden terrorist cell, we have to make some noise. We have to take some risks, huge risks actually. The stimulation will make that cancer cell start reproducing. Then, we knock it on the head with FLAG. FLAG stands for Fludarabine plus high dose ARA-C. The fludaribine will help the cells take on a high dose of the ARA-C. She is on a very high does of ARA-C. This drug is a doozy and will make her very ill. It is big guns chemo and has many, many risks. But, she was able to tolerate it well before. She hasn’t been on the Fludarabine or the Neupogen before. She gets eye drops around the clock because it could cause a severe conjunctivitis that can lead to blindness. This is the horror of having a kid with cancer. You are allowing poison to flow through their veins to try and save them and then hope to God their organs don’t fail along the way. Then, you use everything in your power to try and let them heal. The chemo from AML is so hard on children.
Please continue to pray for Lauren that she is able to handle this both physically and emotionally. God Bless my sweet girl and all the kids that have to bear this horrible treatment. Some day I hope to raise money to help find safer and less damaging chemotherapy to combat pediatric AML. There are usually only about 500 cases of pediatric AML a year, therefore, it gets little research funding. If you wonder why I am writing this blog, it is to keep your prayers coming for Lauren. It is to advocate and educate about pediatric cancer. But, deep down inside, I am fighting mad and I hope that somehow as we get her well and get more energy, we find some way to get people to care enough to help us find a cure for pediatric AML….and then hopefully all pediatric cancers.
Go, Lolo, Go!!!! Hope you are all well. Thanks for loving her. Please send a Go, Lolo, Go picture and keep praying!!!