It is 0200 in the morning on Day 20. I was so excited this evening because we had to move rooms so they could deep clean Room 613 and so they let us move to Room 607. Room 607 aka “the giraffe suite” was where Lolo was for most of her stay during 5th grade. It is a positive airflow room, but it is so much bigger than Room 613. It was hard to get Lolo moved. She tried walking down the hall for the first time since around the beginning of July. By the time she got down the hall, she wasn’t feeling well and was panicking. We had to move everything else down and settle in. We just put everything into a corner in the room, while the nurse got Lauren comfortable. Her pain has been unmanageable for days. She had an ultrasound the day before yesterday which determined that she has an infected lymph node in her groin area. It is extremely tender and hurts her to walk. Once we got her in her new room, the pain management doctor came up to assess how she was doing. The increased dilaudid was not decreasing the pain enough, so he had the amount she can deliver through her pump increased. In addition, they gave her some valium tonight to be able to get comfortable and sleep. She slept really comfortably for a while, but then spiked a temperature, so she had to have her blood drawn for blood cultures to see if she is getting septic again. I have been praying ever since. She has been fever free for four days after becoming septic last week. We have a full week to go before the doctors expect any of her neutrophils to show up. We just can’t have another week of sepsis. She is too weak. The Clostridium difficile infection in her gut has made her receive all her nutrition through her central line. Dr. Ford wanted to give her belly a chance to rest from the ulcerative colitis. There was confusion this week as to whether she has typhlitis or ulcerative colitis. They are terming her condition neutropenic colitis with thickening of the cecum. This is a dangerous situation as it is the beginning of typhlitis. Typhlitis is a complication of pediatric cancer. It isn’t very common, but it can be fatal. It is terrifying, actually. The colitis is so painful for Lauren and it will take a long time to heal. We hope and pray there is not long term complications from this condition.
This has resulted in some very long nights of not sleeping. Plus, it seems all I do is clean….clean…and clean some more. C diff is a bugger. It produces spores. It would be so easy for Lauren to reinfect herself, so all I do is clean. I wipe everything down with “Cavi” wipes, hoping I have killed every C diff spore this side of the Mississippi. We finally got the pain management team on board to figure things out. I haven’t written for a while because I have been exhausted. Last night, I did not fall asleep until 0500 or shortly thereafter. I was able to sleep for a few hours this morning. I was up all night with Lauren helping her manage her pain. It was the worst kind of torture for Lolo. July brings a whole new slew of residents. Last night we had a new one. She was afraid to wake up the doctor to get more pain meds, so made the mistake of letting Lauren suffer through the night. I won’t go into details because it upsets me too much. I will just say everyone makes mistakes, but that one will not happen again. I think my head nearly blew off the top of my shoulders around 3 in the morning, when she finally decided to give our doctor a call. I think it was made very clear this morning that Lauren is very sick and any of these changes need to be reported right away. I need that confidence in the medical team that they are watching her like a hawk at this stage of her hospitalization. She has been neutropenic for so long that more complications can take her down.
Luckily, the phlebotomist that came up to draw Lauren’s blood cultures was a day shift phlebotomist that has been at Children’s for a very long time. I hugged Lori when she was done. She was in and out and very sweet to Lauren. Lauren feel back asleep very quick. Thank God for Lori tonight.
We are going to keep things very quiet in Room 607 for the next week. We will probably not have many visitors since Lauren does not have much energy and is in too much pain. Every once in a while she rallies. She did so well on Friday when Ashley came to see her. She sat up and played games. She was smiling a lot. She hasn’t seen her friends for quite a few days. I might need to let a couple of them sit with her just for her to know how much they love her. She needs some cheering on right now. It is getting more difficult, not easier for her. I am so relieved that tonight we were able to finally put “20” on the board. She must stay stable for two more weeks……..then, we can go home, finally. Please, pray that she stays stable this week. She needs all the prayers she can receive.
I am so thankful that we were able to get the first step in Lolo’s Angels off and running. We are running an online campaign to get the first donations going for AML research. I just know we will be able to meet our goals and make a difference for kids suffering with this awful disease. In addition to the online campaign, we are taking check donations by sending a check to the address listed on our blog. To find how to donate, just go to “home” on this blog and then scroll down until you see an area with a purple background. It gives all the details you need to make a donation. We are partnered with Sammy’s Superheroes to raise money that goes directly to AML research. We are researching different programs doing research on pediatric AML and will find the most effective way to support research that will make a difference in the lives of kids with AML. I hope people help us with this. After all of these years, watching children die of AML after fighting a fight like no other, I just have to do something. My whole family is dedicated to making a difference in this way. Lauren’s fight has inspired us to change this and with your help, I know we can. We are forming a committee that will meet in the next month and launch a few more fundraisers for the year, once Lolo is out of the hospital. Sara Wachter, Kim Root, Jeremy Stanislav, Erin Nahorny and I will be creating fun ways to get people to become more aware of pediatric cancer in Nebraska and also raise money for research. I loved supporting “Make A Wish” and hopefully still can in ways. I love promoting bone marrow drives and blood drives. But, I realized what we have to do is stop these kids from having to have this experience in the first place. We have to give them their childhoods back.
I want to thank all of you for your kind words and prayers. I cannot imagine doing this without the love and support from all of you. There are days I just don’t know how I can do this any longer and someone sends a note on the blog or a kind card. You inspire me to fight for my daughter and to not think about much more than that. I sometimes can’t imagine that this will ever actually be over, but I know I need to trust God that it will. Lauren was so sick last week. She was septic. It looked like she had typhlitis. I was so scared I couldn’t sleep well and I was terrified we were going to lose her. But, then on July 13th, Archbishop Lucas came up and blessed her and she was able to look up and smile at him. I was able to let her sit with Phil for a while. She actually decided she wanted to try a little bit of food. I sat down on the 2nd floor to warm up for a short time. I received a text from a friend that said a mutual friend had sent a note saying all would be well that day because it was Father Flanagan’s birthday. I remembered to pray to Father Flanagan to intercede for Lauren. I also looked up more information on Father Flanagan. I thought about how sad I felt that Lauren was going through this. I felt so inspired by thinking of all the good works he did to help kids in trouble. I hope I have the determination to never stop helping these kids with AML. I thought that this was a shove from the dove, so to speak. It made me more determined that our family can get through this and that God is with us. Maybe He is giving us a purpose to help kids with cancer. I know He brought Erin Nahorny in my life for a reason. I know Jeremy, the executive director, of Sammy’s Superheroes is in our life for a reason. We might not ever do great things like Father Flanagan, but we can try in small ways to make a difference. That isn’t such a bad idea either.
I don’t know if Father Flanagan interceded, but Wednesday went pretty well. Lolo’s heart rate finally became normal. The best was that on Friday night, she even had a little bit of cake and a midnight dance party with some of the nurses. Nurse Kaylee brougth Lolo two of the bundt cakes from “Nothing bundt cake.” Oh wow, she nibbled a few bites of cake and thought she was in heaven after not eating all week. She couldn’t have much, but it was a reason to celebrate. It was nothing short of awesome! There are such wonderful nurses on the 6th floor. She got to have some fun with them in 5th grade, even though she got so sick. This time she keeps having awful complications that keep her in isolation. Some of the new nurses don’t even know how fun Lolobelle can be. I hope she gets to have more midnight dance parties coming up.
Lolo’s fever has come down and she is resting comfortably. It is now 3 am, so I must sleep.