Dr. Coulter called to say that the growth is benign! There is no evidence that the AML has returned at all in this area. This is incredible news. It is scar tissue with nerve tissue trapped within it. This is what has been causing her so much pain. I can’t even believe the good news. I have been bursting into tears of joy this afternoon and trying to call my family to let them know! Our family is ecstatic, although Lolo insists she wasn’t worried at all and knew it would be good news.
Now, we help her heal. The entire mass has been resected and is out. But, it has left a big depression in her leg. It will take a lot of time to heal. She is to stay off of it for a couple of weeks and as the stitches heal, she will begin to rehab the leg to get her muscle strength back. We were told that this will be very painful for her and we will have some chronic pain issues. The intense pain she was feeling in her calf will hopefully be gone now that they cut out the scar tissue that formed around the nerve tissue. Now that has been removed so we are hoping that she will have some relief. She is using one crutch, but is up in her room bored and a bit grumpy. Visitors are welcome! She could use some fun games to play, especially card games. Her friend, Emma, came by today and washed her hair for her. That was especially nice! Lizzy brought her some ice cream yesterday. She is bored and hot right now and mad as a hornet. The big concert is this weekend, so we need to find a way to get her there. Yeah, Memorial Park Concerts are the best!
I need some fun ideas or crafts to help her stay put for a couple of weeks. Let me know if you have any good ideas. I just started a new job as an administrative assistant at St. Margaret Mary’s. I am going to love the flexible hours. If anyone wants to come babysit Lolo…let me know! She is kind of ornery, but really good at card games!
Thank goodness Jonathan came home for a visit. Now that we have good news, we will get a chance to go out and visit him in Colorado to see how pretty Buena Vista is. He says it is beautiful. If you get a chance to do some white water rafting..ask for Jonathan at Kodi Rafting! He is a good guide.
Thank you so much for your thoughts and prayers! We will not stop fighting for better treatments and a cure for AML for other kids. We are running a bone marrow drive this Saturday around noon at the Mark for the Krew Dude Volleyball Tournament and need a couple of volunteers for just 2 hours. We also desperately need some help on the 4th of July around 9 pm for a couple of hours. The LaVista Foundation will donate $1000.00 to Lolo’s Angels if we pack up the firework stand in LaVista. Please message me if you can help. It is hard work! We did it last year and received a $1500.00 donation. We had about 10 of us, which is ideal. Right now, we have 4 total that have volunteered…Phil, me, Megan (our 2nd VP), and her boyfriend Matt….we need more help. This will cover ½ the cost of one child to get their genome sequenced. Please help if you can! I have a renewed energy to help this cause. It has caused heartache so many families. We are so thankful and blessed to have come this far. We are so lucky Lolo is going to have the summer of her life!
PS…We also got very good news another little guy fighting AML that is still in remission and has one last month of treatment to go…..so happy today!!!