Lauren’s appointments this week went very well. Her counts are continuing to rise. She is still anemic and her platelets are low, but they just blipped over the mark of being critical. Her hemoglobin climbs and then it drops again. She is still anemic, but does not need to have a transfusion as long as she doesn’t dip below where she currently is. Red blood cells and platelets take a while longer to recover than the white blood cells do. Her white blood cells keep climbing. She is no longer “critical” with her ANC, however, she also isn’t ready to be in a group in public. She has been mostly staying at home resting. She has had an occasional friend over. Most of her good friends are off on vacation or away at camp. She has been hesitant to do much because she tires out so fast. She can’t quite keep up with her friends and doesn’t want to hold them back. I know once she regains her strength she will be right back in the fold thick with friends because that is her way. I worry too much, I think. I worry that she only has a couple weeks left of summer and I desperately want her to have just a little bit of fun. Our last meeting with Dr. Coulter gave her the big “ok” to start school on time!!!!! That is, if she is well and her counts continue to rise. She has a consultation appointment with the Oncology Radiologist, Dr. Lin this next Tuesday. She will find out what is involved with the radiation that she needs to receive and we need to schedule her for her appointments. After the consultation, we are thinking she might go into surgery real quick Wednesday morning to get her central line out. We are still waiting to hear.

The big question was will she get her central line out in time to try out for the Marian golf team. You know, Lolo, she doesn’t let moss grow under her rump. She has decided she could rock a golf skirt and could catch up in strength in time to try and play on the Marian golf team. She is going to have a little later tryout than some of the girls, but the coach is willing to let her try.

Sara & Lolo2Lolo’s physical therapist is Sara Pohl. Sara is a Marian alumnus(i?) and also the daughter of one of my former colleagues at St Robert’s. She worked with Lolo in the past and was eager to help her regain her strength after being in the hospital so long. I am sure that Madeline and Carissa at Children’s are proud that Lolo started right back in Physical Therapy this week. Sara (Lolo’s PT from Excel PT) was supportive of Lolo getting involved with golf at Marian, so offered to meet us at the golf course and get Lolo swinging with some help from her PT. Lolo still has her central line in and is uncomfortable reaching her arm up above shoulder level. After sitting in a bed since April, Lolo needs to regain her strength and avoid any injuries. We certainly don’t want her to pop back into sports and injure herself. We met Sara at Miracle Hills Golf Course. Lolo did some short shots with Sara. It was very fun. Miracle Hills is where the longest “hole in one” in the country occurred. I think there was one in Hawaii just recently that is said to have beat the record. But, Miracle Hills is a good place for Lolo to relearn her golf swing….we believe in miracles in our family. It was pretty cool also that the person who taught Lolo golf when she was about 6 was Phil Palmer.

Sara & LoloPhil Palmer was a golf pro at Field Club and now works at Miracle Hills. As we walked up for Lauren to try doing a few long shots, there he was giving a lesson. He gave us a lot of encouragement for Lolo and was so glad to see her out giving golf a try. He even gave Sara some PT ideas on getting Lolo back in the “swing of things!” It was awesome. Lauren did pretty good. I think she will do really well once her line is out and she regains some of her muscle mass that she lost.
Excel-logo-blackSara Pohl and Excel PT supported Lolo on the golf course, however, they also went a step beyond. They have decided to adopt Lolo’s Angels during the Olympics as a non-profit that they are supporting. For every gold medal the United States receives in Rio, they are donating $50 to Lolo’s Angels. We are absolutely thrilled that they are partnering with us to make a difference by raising money for AML research. We didn’t solicit their help, it was their idea, which is phenomenal. What an incredible gesture. Are there any other businesses that would like to match their goal? Today we jumped up and down when we heard of the first gold medal being won by the USA. This Olympics will have special meaning to us. We are cheering on so many of the incredible swimmers that sent Lolo “Go, Lolo, Go” pictures. Lolo has an Olympics of her own coming up. The fortitude to fight through chemo all those months and the determination to go to high school and regain all that she has lost makes Lolo a champion in my mind. Watching her overcome so much in these last 4 years has humbled me. I try extremely hard not to be overprotective of her. I just don’t want her to have any more challenges. I have to let it go and sit on the sidelines and just cheer her on.

This week Jonathan is in Wisconsin with the Parry family. Our family was invited to go on vacation with them and we had planned to go, but Lolo’s treatment and her strength was not working out. We wanted Jonathan to still have a family summer vacation, he just had to be part of another family. I miss him so much. He texts me late at night and says how much fun he is having. I can’t wait for him to come home. But, I am also so grateful to Jane & Gordon Parry for letting him have a slice of Wisconsin summer with them. Someday we will go hang out with them up there, someday we will have a normal summer.

This week I was moving around nervous about all the big plans coming up. I am going back to work. I am getting Lolo ready for radiation. We are trying to do some work on our house. We are launching Lolo’s Angels and have some big events coming. So many things are falling into place and I know we are doing the right things, but I am nervous about being able to handle it all. I am especially nervous about going back to work after not working since Lolo was diagnosed with leukemia the first time. I hope I can manage it all. All of those worries are useless and I am trying to get myself settled down…..one thing helped this week and one thing threw me into a tailspin.

First of all, what helped is meeting a couple of my new colleagues. I had a couple of fellow teachers over on Friday. I have to say, they helped me a lot by making me feel welcomed. They also made me laugh a lot, which was very much needed. I think I am going to enjoy them very much. It was nice to have something to look forward to. I also got worried because I don’t have a classroom yet. I also will share a classroom and I found my new mission while I am at Marian…..we need some really good microscopes. I am on a quest. I can’t help myself. I miss my beyond fabulous Zeiss microscopes at Children’s Hospital. I was spoiled. I also want to make sure all those girls at Marian can operate a microscope like a “pro.” Ok, I am already excited about teaching, but I hope I can do the roving teacher thing without being a space cadet. As I worked myself into a frenzy worrying about that I started also worrying about our non-profit and the blog and how all of this transition was going to work. I spoke to my friend, Molly, and she reminded me of a quote….”Vanity of Vanities” and I pulled my head out of all my worries. I remembered that if our nonprofit takes a while to get going, but ends up helping even one child, it will be successful. It doesn’t matter if we flop, if we keep trying, we are going to accomplish what we need to and it isn’t about how we appear to others, it is about doing this for the right reasons. Our non-profit has the sole intention of helping to find a cure for AML and raising awareness for bone marrow registry. Every dollar we make and every person we register for the bone marrow registry is a success. It may start off small, but even small non-profits all working together make a difference. We just have to keep trying. This overlapped to my feelings about teaching. It isn’t about the fancy equipment and the polished classroom, it is about having a vested interest in the students. Even though I am a techno-geek and love all the bells and whistles of technology and science and I absolutely love having an organized spiffy classroom, I need to focus on getting to know my students well and help them learn Biology. I won’t go wrong if I realize that is what is most important….roving teacher or not….I can’t wait to get back in the classroom.

So, I was moving along smooth sailing….good results for Lo, good attitude for all the change coming up for me, fun morning at Miracle Hills….and then boom! When we got home from the golf course, Lolo was meeting with Maggie, our new Jr Board Chairman to design Lolo’s Angels t-shirts. While they were working, Phil and I were doing chores. He walked down to the basement and his feet were soaking wet. Yep, no joke, our whole basement was flooded. Long story short….a pipe in the wall connecting our sprinklers in the front broke and has been flooding our basement for hours. We had a few inches of water in our basement. We called a plumber, moved storage items and pulled up all our carpet. While waiting for the plumber, I ran to get coffee and couldn’t stop crying in the car. All the kids’ baby pictures were stacked in our storeroom waiting to be hung up in our office. Most of them are ruined, one side is soaked through. I cried so hard I was gulping. I realized I have been breathing through all the stress and thinking I was doing just fine. I have so many worries about Lolo, but I just shove them down. I can’t stop worrying about our finances. I worry about paying for Jonathan to go to school. I worry about going back to work. Then, I came home and wanted to be strong for Phil who is worried about his mom. But, I couldn’t be too strong and started blubbering all over again. I ended up going to confession. I felt like I was doing the worst thing that I could do; I was giving into fear and I was losing sight of all that was good in our life. It is easy to do because, like most of us, the extra cost of repairing the basement and the plumbing is very stressful. But, all I prayed for all summer was for my kids to be safe. I prayed for Lolo to be home. All I wanted was my sweet child to quit suffering. The sweet old priest that was visiting SMM helped me so much to realize, even in the midst of crappy days with flooded basements, God wants us to be grateful. He reminded me to be grateful of answered prayers. This made me weep even more. He is RIGHT!!! Why is it so hard to not get caught up by the small stuff. Yeah, I am going to have to beg, borrow…maybe not steal to find the money to pay for the basement. But, it is like we realized last time Lolo was sick….if it can be solved by time and money (even if you don’t have the money at that particular time), it isn’t really stress. I have my children! God answered my prayers. He performed a miracle and even allowed Lolo to leave the hospital earlier than expected. Time to let everything else go. This sweet old priest chuckled to himself and asked me why I have been trying to do all of this on my own since Lolo came home. He asked if I have been asking God to be there with me. He asked if I have been praying. Well, I guess you know the answer.

Tomorrow, Lolo, Phil and I are travelling up to Atkinson, home of Team Jack! Also, new home of Father James Weeder. He will be the new pastor in Atkinson. We are going up to watch the Archbishop install Father Weeder as a new pastor. I figure if Fr. Weeder can drive 3 ½ hours to Omaha to anoint Lolo when she entered the hospital last time, we can drive 3 ½ hours to witness his installation. Many prayers for Fr. Weeder. Not many things better in this world than a truly, holy kind person.

Maggie CrnkovichAnother positive note, our new board member, Maggie Crnkovich, designed our logo for Lolo’s Angels. She did such a wonderful job! She is in charge of Communications for Duchesne Academy and will add being a member of the Executive Board of Lolo’s Angels to her resume. She is such a talented and kind individual; I am excited to have the opportunity to work with her. Maggie has been invaluable on our board. She is also working on our tri-fold brochure design that is almost complete to be handed out during Dundee Days. We have our next board meeting this Monday night and we have such incredible people helping us. I will be posting a picture of all of us as we begin to raise funds for AML.

A unique thing about Lolo’s Angels is that we will also have a Jr Board of directors. Lauren is going to be a big part of our fundraising efforts. As a teacher, I know that teenagers are a wealth of information and have so many untapped abilities. We decided that we will have a JR Board that will learn how to run a non-profit by pairing with our regular board and having tasks to complete on our own. We will be introducing our first Jr Board coming up. We will also be moving Lolo’s Angels to its own website, once we have that up and running. In the meantime, we are looking for more businesses to underwrite a few of the events that we have coming up. We are also looking for some businesses to donate to Lolo’s Angels. Please email me, LesLee, @[email protected], if your company is interested in helping us! Also, if you would help us spread the word that we are here and ready to go by sharing our information on social media. We would love to keep rallying Lolo on to recovery by continuing our GoLoloGo2016 facebook campaign. We also could use your help retweeting our tweets @Lolosangels and #GoLoloGo! Thanks so much to everyone for their continued support. We appreciate it very much!

#GoLoloGo

 

 

2 Comments

  1. Janet Clark Nieto

    LOVE the logo! It’s absolutely perfect! So glad to hear you both got the green light to start school again. Wishing you wonderfulness as you begin a new chapter and praying daily for Lauren’s strength to return. Love you, Sis! Mmwwwaaahh!!!

    • LesLee

      Love you back, Janet! I know you understand Lolo’s fight on a personal level. I hope you and the kids had a wonderful summer. As usual, you were up to big adventures! I look forward to the time when things are settled and I can take off and meet you on one of your trips. Thanks for all your support.

Reve Logo

Copyright © 2019 Call To Water