I stayed awake last night until midnight just so I could write “15” on the hospital whiteboard. We are only half way through today. Today she is stable. No temperature last night. She was able to manage her pain. It doesn’t go below an “8” and Dr. Ford said it probably wouldn’t, but at least she is not having hours….hours….that she is at a “10.” At least she isn’t tightened up trying to sleep or breathing fast to manage the pain. She was getting to the point where she had so much morphine on board she couldn’t talk or focus, she could just cry.

 

Now, she was even able to watch “Project Runway” on our Wii in the room. Children’s Child Life team has a few Wii’s on the floor that a patient can use. Phil got her a “hulu” account so she could watch all the seasons of Project Runway. We watched the storm from our window and watched a few episodes. She even tried some chicken soup last night. I lost track of how many days it has been since she has eaten. Dr. Ford and Dr. Abromowitch are letting her test small amounts of bland food in addition to the TPN she receives through her central line, otherwise, she isn’t really eating or even drinking. Dr Ford was around until late and checked back in on Lauren. She started having some pains in her chest last night and some trouble breathing. She had an allergic reaction to one of her IV antibiotics, but gave her Benadryl and powered through. The nurses watched her close with vitals, but the risk of her being pulled off an antibiotic that was working outweighed the risk of the allergic reaction. She got platelets yesterday. She has ulcers in her colon and her colon is thickening. I knew it was bad because of the extreme pain. She is still without any white blood cells at all and Dr. Ford said he would be surprised if any showed up before Day 28, which is 13 more days. 13 more days we have to keep her from getting a different bacteria in her blood. 13 more days she has to fight Clostridium difficile in her gut without any immunity. Her intestines were already damaged and torn to shreds from the chemotherapy and then the antiobiotics, now she has a pervasive bacterial infection. So, I asked the dumb questions…..How do I know if it is getting worse? What do you have ready if she perforates (C Diff can cause the intestine, colon, to rip and they would have to do surgery. The risk of doing surgery on a kid to the bowels, without any immunity is very high. I started crying. Phil didn’t speak. Dr. Ford said he is worried about Lauren and then confirmed……she IS not going there!!! It is Day 15…..13 more to go until the neutrophils come to save the day. Please, God, hold Lauren in your arms and help keep her stable until those neutrophils come.

This morning she is sleeping so well. Her labs came back with some concerns. She is severely anemic, so another transfusion. Something, a medication or the IV nutrition is causing her pancreas not to work so good. Her blood sugars are dangerously high today. She might need insulin. Oh, geez. Not another problem! I am waiting for rounds to find out why this is happening and what they are doing about it. I know Dr. Ford already has a plan, but I want to know. Wound care wil come today. PT is on its way at 1. Speech Pathology will come and work with Lauren on memory loss and word retrieval. She will have respiratory come soon to assess her breathing. I no longer leave the room much, but you couldn’t pry me out of here if you tried. I am going to lay down and sleep as soon as I finish writing this. She is sleeping restfully.

This weekend, Lolo’s incoming freshman class for Marian High School class of 2020 had another big get together to allow the kids to get to know each other. They did a group picture and rallied Lolo on. So, did Creighton University Volleyball Camp this last week. Lolo has gone to that camp since she was 10. It is always a highlight of her summer. She didn’t get to participate in either events and her happy, sweet presence was missed. Thank you so much Marian and CU volleyball for recognizing that one of your people was missing. You all recognize that you don’t leave anyone behind. No one fights this alone. Thanks for being by her side.
I have been mentioning Sabrina, the little baby that has AML that has been going through treatment up on 6th floor. She is 1 and babbling. She is so pretty. Her mama, Amanda, is a teacher at Dundee Elementary. We have had some hard conversations. She is working hard for Sabrina. Sabrina…and Lolo…..and little Evan, all have AML on 6th floor and they all need your prayers. I asked if it was ok to ask you to pray for them and it is….Lolo’s Angel’s is almost ready to go. We are ready to raise money for Lolo, Sabrina, Evan and all the kids fighting AML that need better medicine, a better prognosis, dedicated scientists to raise their chance to live a life. Sabrina was supposed to go to transplant at UNMC this week. She was ready to go, but her last bone marrow biopsy revealed that she didn’t stay in remission from the last treatment and isn’t eligible to go to transplant. The drugs we have available “on protocol” are not working. Sabrina needs a moonshot and that moonshot is Cincinnati Children’s Hospital. They have a drug that is a clinical trial that might work. They can transplant a baby like Sabrina that doesn’t have a solid, strong “match” for transplant. Prayers for Amanda as she takes off today and drives with baby Sabrina to Ohio. Prayers that this clinical trial works. I am more resolved than ever to stop hearing stories like this about AML. So, this is what we do. Watch this week for us to launch our fundraising page to start raising money to fund a research project. My goal is $125,000. We should be ready to start taking donations by the end of the week. Reach deep, people, these kids suffer like you wouldn’t believe. So many of them die in battle. It is just not right. Please, ask your companies, your relatives, anyone you know to help us raise some money! Next, please consider having a bone marrow drive at your workplace. Too many people don’t have a match. Too many that do don’t have a good match that gives them a fighting chance. We basically need more people to register. Please send me an email if you would like to have a bone marrow drive and I will connect with my good friend, Carol, from Delete Blood Cancer.
Please, later today read my blog under “The Ocean.” I will be writing more about bone marrow drives, if Lolo stays stable today. Green Plains, Inc. is having bone marrow drives in 9 states because they were inspired by Lolo. Their CEO, Todd Becker made a decision to make a difference. This decision is going to save lives. I want to explain more about this and how we all need to help.

Thanks so much to Green Plains, Inc. for making a difference in so many lives. Thank you for stopping and recognizing Lolo’s fight and helping us help others.

God speed, Sabrina, Lolo’s Angels are behind you all the way!

#GoLoloGo