Lauren had her blood counts checked on Thursday and they were trending in the right direction. She is starting to eat more and sit up more. Yesterday, she even had her friend, Emmy, over for dinner. Emmy stayed and watched a movie and then they went out to Red Mango for ice cream. That was a lot for Lolo at this point, but it was probably one of the highlights of her whole summer. Finally, just a night to hang out with a friend. No IV pole, not in the hospital, eating regular food! We are hoping that Lauren will be given the green light to start school on time on August 17th. She has to stay around the house until then and isn’t cleared to be out in public yet. Her immune system is still trying to make enough cells to be safe. She has an appointment tomorrow to have her blood drawn and have her bandages changed around her central line. Her big appointment will be on August 3rd with Dr. Coulter. We will find out our next step. We will find out about radiation and getting to go back to school.

She can’t do much yet, but she is working on her summer reading assignment for her freshman year. It is “How I Saved The World in 65 Days.” It is a good story. The main character reminds me of Lauren is some respects. Lolo’s Angel’s has a great graphic designer, Maggie, that has been working hard on the logo design. Lauren has been helping to figure out a good t-shirt design for her shirts. She did not like the idea of Lolo’s Angels and having to focus on cancer anymore until I told her how much it would help other people. We are having a Jr Executive Board of high school kids that will learn as we go about how to run a non-profit. Lauren has asked a few of her friends to participate. It will be a good experience for them to see the good in the world and how their efforts can help others. She has such a great group of friends. She hasn’t been able to see many of them. She is still kind of weak, but as she perks up, I am sure she will be excited to see them. She has let go of the idea of trying to play volleyball. It would be too big of a leap and she has missed all of the summer training. She won’t have her strength back for a very long time. But, she is hoping she can still be on the golf team. She is going to find out in physical therapy if she is allowed to swing a club with her central line in her chest. The line moves and it freaks her out a lot. She can’t wait to get that thing out of her chest! She might have to wait until she is done with her radiation treatments.

I found out good news in the middle of the night! We heard from Amanda, Sabrina’s mom. I can share she is doing well so far and is getting ready for a bone marrow transplant. I will share more when I can. Please keep your prayers coming for this family.

I am sorry if I keep pounding the issue about AML. I hope I don’t create any misunderstanding. I am a champion for every kid with cancer and their families. I am not saying every kid with cancer doesn’t suffer. There isn’t a suffer meter that needs to be reached to have my sympathy. There are families that have it easier and there are families that have it way worse. I wouldn’t wish this experience on anyone. My fight is to get research dollars allocated for pediatric AML. There are many reasons why it just doesn’t get funding and why the prognosis of these kids is devastating…..please, be patient with me. As I have checked with different government agencies to make sure my statistics are correct, I keep hearing more and more bad news about AML. It scares the bejesus out of me to tell you the truth. Here is a blurb from the Leukemia and Lymphoma Society about AML:

About 20,000 new cases of AML are expected to be diagnosed this year in the U.S. Statistics show that fewer than 25 percent will survive beyond five years. The blood cancer causes more than 10,000 deaths a year in the U.S. and treatment options largely have not changed in the past three decades.

New therapies are needed now more than ever. AML requires immediate and aggressive treatment and most patients will relapse with conventional therapies. Patients with the FLT3-ITD mutation, which is seen in about one-third of patients, have a particularly poor prognosis. Despite the millions of dollars spent on research over the past 30 years, most patients still receive the same two-drug chemotherapy cocktail.

So, the thing to take away from this is that the current research and clinical trials that have promising drugs are very rarely available to pediatric patients. Lauren’s chemotherapy cocktail is that old, it was that same two-drug cocktail, given in higher doses than they give adults. It caused her tremendous damage to her organs, but they didn’t have anything better for her. The chemo she received knocks out her body, but it doesn’t necessarily kill every leukemic stem cell there is. To see if the stem cells are still there, a bone marrow aspirate is done. The problem is this is just a sample and can’t always detect what is called minimal residual disease. She has taken a beating and we still are in limbo. We have to be on guard and ready for this insidious disease to come back again. We are supposed to find comfort that everyone is ready for transplant, if it should arise. But, the truth is transplant has a high fatality rate. It is dangerous for her to have to go through the pre-transplant process and have total body irradiation. We have to find a better way for kids to fight AML. After I heard the news about Sabrina, I also looked up news about how 3 families were doing after losing their kids to AML. These families don’t know me. I have been present at their fundraisers or learned of them through friends. I think about them often. I wish I could have raised money for research before they lost their beautiful children. I will pray and fight hard for Lolo. I hope to God Sabrina experiences a miracle and fights her way through transplant. Amanda deserves a chance to be a mom to this beautiful baby. So, if you think I am nuts and just need to let go, you are probably right. But, how do you stop fighting this fight when you see the faces of kids like Henry Seretta, Parker Chipman, and Jordan Taylor (#30!), Kaitlyn…and of course, sweet Addie?

I want to find research that helps detect minimal residual disease and also finds out why these types of leukemia in children travel out to the skin. Is there a way to treat the protein or factor that causes the leukemia to migrate and become leukemia cutis…which is a way to say metastasized leukemia. Once it become a “liquid tumor” it is impossible to contain. That is what we are fighting. If we can raise our $125,000, we can fund a grant to research alongside an adult trial to include pediatric patients. We could potentially help with Children’s Hospital of Philadelphia’s research in pediatric AML. Hopefully, in Nebraska, we could find out why we are in the top 5 states for pediatric cancer. Governor Rickett’s has been so helpful helping me gather statistics for pediatric AML in Nebraska. Our state has done so much good for pediatric brain cancer, even allocating $300,000.00 of our state money to Team Jack. This is great for pediatric brain cancer, but we do need to share the wealth. I am hoping that NU opens up their team events and awareness programs to all kids with cancer and not just pediatric brain cancer. Other kids are dying too, and actually at higher rates. Please, help me level the playing field and give all kids a chance. Sometimes I feel like everyone has given up on the kids with AML. They think the prognosis is so bad, they have stopped trying. Or, they see the kids fighting hard through ALL and think AML kids have the same success rate. If you have ever hung out with Lolo for any length of time, you would never give up on her.

I think many people think I should sit back and enjoy the days that we have at home and get excited for Lauren to start high school. Believe me….we are! However, if I sit back too long and wait, we would be foolish.

Right now, we are so close to raising 3% of our goal. A few donations and we will be there. We have one possible company that might help us print t-shirts. I am looking for another company to pay for the printing of our literature to distribute at fundraisers. Please email if you would consider this. I am also looking for a company to underwrite the cost of a banner for us to display at bone marrow drives and fundraisers. Please let me know if you would consider this.

17 days until the first day of high school!!! I hope this is a great year for Lolo. Oh, the places she’ll go and the things she could do. I know we are a bit low and sound defeated lately. We are just tired. All of these thoughts are tied together with a smile. I have a lot of hope left. I could tell this week, I needed to return to prayer and meditation and let go of a lot of my grief. Some of that is letting go of summer too. It is my favorite time of the year. I countdown to summer. I can’t believe this is Jonathan’s senior year! Oh, I hope we get to have a good year this year. I start work next week for the first time since Lolo was diagnosed the first time. I am even her Biology teacher. That should be interesting. I am ready to work hard. I want her to be proud of her mama, just as I am so proud of her.

#GoLoloGo