Tonight, Lolo is resting while Phil reads. I finally took a break to write to let you know that Lauren is doing better. She is still in a lot of pain. This week has had its ups and downs, but the trend is up and we are thankful for that. So much has happened. After her becoming septic and having so much pain from neutropenic colitis and C. Diff, Lolo and I were just plain worn out. I have crashed this week as she has slept, slept, and slept some more. When she sleeps, she is resting much more comfortably. Her color is returning. Her heart rate and respiration rate on the monitor all appear mostly normal. A week ago, her heart rate was ranging from 120-160 most of the day. For a couple of days last week, her heart rate stayed high and even her sleep was fitful. It was because of the pain and the bouncing up and down of her temperature. This seemed to level out. I felt like I was on high alert at all times.
As she stabilized, her ulcerative colitis began to change and she started having bleeding. I was stressed and afraid. There has been a chance that her bowels would perforate and she would have to go to surgery. She had enough blood that I couldn’t sleep, but it slowed down after a few days. She received transfusions. It was painful, but it never escalated to the point of needing surgery. She had the beginnings of typhlitis. We are still on guard and full of hope that her colon and intestines do not have any long term complications. It is looking like they are healing. We hope she has a full recovery of her GI tract.
After a few nights of waiting to see how this was going to progress, she lost a lot of sleep. She was up in the middle of the night and didn’t ever sleep well because of pain. That seemed to change on Wednesday and Thursday.
On Wednesday night, our friends, neighbors, fellow parishioners, and kind acquaintances gathered outside Lolo’s window on the grass, way down below the 6th floor of Children’s Hospital and prayed the most beautiful prayer of all…..the rosary! They prayed for Lolo and all of the children at Children’s and the medical staff at Children’s. Lolo was facetiming with some classmates. Phil listened, I prayed along with the group, and Lolo laid in bed and listened. Her facetime connection was perfect. The sound of all of those people filled Lolo’s room. Other than the sound of prayer, the room was silent. Lolo made her way over to the window and waved at the crowd. It made me cry. It made some of my friends cry. She handed me the cross that once belonged to Father Flanagan to hold with the rosary beads given to us by Archbishop Lucas. They were given to him by the Pope. However, this wasn’t just a Catholic event. This was a community event and it was inspired by my sweet daughter. I can’t tell you how much hope was given to us by this experience. It had a tremendous impact on the nurses on 6th floor and the other families that looked out the windows to see people praying for their children. I cannot thank you enough. It was the most generous gift and it came at a time when our family needed to be embraced and encouraged. We are worn out. However, we can get her to the finish line.
Last week, Dr Ford teased me some, but he also prepared me by saying that we shouldn’t expect any neutrophils this week based on the usual results from the combination of chemo drugs that were given to Lolo this last time. I teased him back saying that since the Archbishop blessed her on Father Flanagan’s Feast Day (July 13th), her counts were going to come back early, despite how sick she was. I felt a little bold and told him that Father Flanagan was ordained on July 25th, so that would probably be the day we were going home. He laughed and kind of worried about my ideas. I have to admit, I think it was desperate wishful thinking on my part. But, yesterday, Lolo had an absolute neutrophil count of 186. Today, it dropped back down a little. The point is SHE HAS NEUTROPHILS!!!! Dr. Ford probably thinks I am nuts. But, these things help me have hope so I will just keep believing.
The prayer service was the biggest shove from the dove, though. I think the media coverage was touching also. It certainly isn’t about being famous or grabbing attention. It is important for awareness, though. It certainly doesn’t hurt for Lauren to feel loved by her community either. As we form our non-profit called “Lolo’s Angels,” I hope the media attention helps us bring people’s focus to the plight of children with cancer. I hope it brings our community to wrap their arms around all of these children that suffer with cancer. I hope people go to our blog and donate funds and help us raise money for research that cures AML and all pediatric cancers. Kids should not have their childhoods stolen away from them like this. Lolo should get this year back; she should have summer given back to her.
Some people have asked me how I have the energy to start this non-profit in the middle of the sleep-deprived nights at Children’s. I am no hero, nor am I particularly amazing in any way. For the last 4 years, I wrote on Caringbridge about Lolo and then we developed “calltowater” and I receive many letters from people. I receive emails and handwritten letters sent to me from parents, people that had cancer as kids, relatives of kids with cancer. Some of them are survivors. Most of the letters I receive from families of AML kids write about the loss of their child to AML. If your wonder how I have the energy, please read her attached letter.
This wonderful aunt of dear Addie wrote this to me last week and also sent me a picture of this beautiful child. Lolo’s Angels will raise money for research to save children like Addie. She looked so much like Lolo when Lolo was first diagnosed. I also think of Henry Seretta often, Kaitlyn, and JT, and Jordan….the list goes on. Children with AML are dying on a gruesome battlefield. I am sorry if that description is an assault and it is harsh, but it is the truth. Please, help us raise money to change this.
We have never met, but Lauren’s story has touched me in a way that I don’t think it can touch most people. I first started reading about Lolo when the article came out in the OWH about her classmates outside her hospital room. Her story struck me, as she was the same age as my niece, who had AML just months before Lauren’s diagnosis. My niece, Addie, was diagnosed with AML on March 20, 2012. Her first symptom of the disease was a week before that. Less than a week later, a CBC was drawn at the 3rd doctor visit, finally discovering the leukemia, unfortunately it was very agressive and had advanced tremendously. She became critically ill with the first chemo treatment, was on life support including ecmo, until she had a brain hemorrhage and died on March 26, 2012. So many tears I have cried, so many questions, so many thoughts as to why she wasn’t allowed to battle longer so she could meet her baby sister, go to her first dance, go on a first date. I have followed your blogs, always hoping Lauren would get the chances that Addie didn’t.
I am so sorry for what Lauren has been going through. I read about her pain and suffering. I feel so battled, I don’t think I could have been strong enough to see Addie go through what Lolo is going through, yet I still beg for time to go back and give her that chance. My heart absolutely aches for your daughter, what she has had to go through so young, that most people never have to experience in their entire life. Please know that my thoughts are with her and your entire family as you battle this horrible disease.
It is after midnight and I am going to head back into Lolo’s room to write Day 26 on the board. Please, keep praying for her. In order to go home, she needs to start eating real food and be taken off the TPN. She has to get off the dilaudid pump, so she needs to be relieved of the pain, and she needs to have an ANC around 500 and be making her own platelets and RBCs. My sweet girl has a lot of work to do to get home. But, she can do it. Jonathan is coming up tomorrow to get her up and get her walking. Last night, Lizzy Stivers came to visit. She hung out with Lauren. We got permission, finally, after 24 days to take her out of her room. We put her in the wheelchair and wheeled her down to the 2nd floor. No one was there. It really wore her out, but it was a step in the right direction. During her PT yesterday, she walked. Word got around the floor that Lolo was out walking. Everyone was so happy to see her up out of her bed. She got a lot of encouragement. Her wonderful nurse, Christina, got special permission to take her down to the coffee shop and get a smoothie today. She had to be with her nurse and she had to wear a mask. But, she walked on her own, dragging her IV pole. She had a really nice time with Christina. When she got back, she visited with Kate Peterson, her former nanny and family friend. Kate is leaving for London tomorrow morning, but she has Little Ben the giraffe that she is taking with her to pose in some Go, Lolo, Go pics London style. Kate is going to be on the Lolo’s Angels Executive Board with so many of our talented friends. I can’t wait for her to get back, get Lolo home, and get started!!! Nanny came up tonight too because she heard Lolo was doing better. All of these visitors and pulling back off of the pain meds is making Lolo really uncomfortable. However, it is all a step in the right direction. She has been through the ringer…..it is time to heal. It is time for this to be all over. It is time for her to blow this popsicle stand and start her life as a Freshman at Marian High School.
She can do this! Fight to the finish, my sweet Lolobelle!
PS We will be set up at Dundee Days selling t-shirts and hopefully, hosting a bone marrow drive. More news to follow…..we are looking for a company to underwrite the cost of our t-shirts. Anyone know of a company that would like to help?