Lauren is stable right now, but it has been one heck of a few days. Today is Day 11. If it wasn’t for Dr. Abromowitch being able to predict Lolo going down fast and being a couple of hours ahead of what was happening, we would be in the PICU right now. All the events are running together because I feel like the last three days and nights have been non-stop. I keep thinking we are going to have some days of smooth sailing, but for some reason, Lolo’s treatment has been one bad dream after another. However, I am thankful tonight. Extremely thankful and full of hope. Lauren is stable tonight.

Three nights ago, the pain in Lauren’s abdomen was unmanageable. She could not get ahead of the pain and the nausea. She was having sharp stabbing pain in her abdomen that took her breath away. Even with oxycodone, her pain was staying between an 8 and a 10. The night before last, she cried all night long. Even when she was sleeping, she would whimper in her sleep and then wake up suddenly crying more. I stayed up all night watching her because she was starting to change. She had started getting anemic and her counts were at 0. Dr Abromowitch told me to not be surprised if she spiked a fever and became septic. She reassured me that she had the residents on notice to be vigilant with Lolo. Her heart is a big concern because the extra stress on it because of sepsis after being the chemo mitoxantrone is nothing short of scary. By yesterday morning, Lolo couldn’t hold anything down, including her oxycodone, which meant she had gone all night without any pain meds. At one point in the middle of the night, Lolo asked me why shed had ever been born if she was just going to be sick. It made me cry. I had too big of answer for her. There are so many reasons why she is here and i just know God has big plans for her. I know he has plans for her to have a happy future. I hope so much that she doesn’t have to suffer anymore and be sick. The problem is, I can’t promise her this leukemia is not going to come back. Hers isn’t like ALL or other pediatric cancers taht once treatment is done, remission means it probably won’t come back. AML and a few of the other pediatric cancers, or high-risk ALL, do come back. Even now, after everything she has been through, this damn things can come back. That is our cross to bear.
Because Lo has critical platelets, she can’t have motrin. In fact, leukemia kids on treatment never take motrin. She can’t take tylenol because it masks the fever that the doctors need to watch for. So, the first step up is oxycodone taken orally. When the resident came in to examine her first thing in the morning, my mama bear came out. I hadn’t slept for two nights and I couldn’t handle watching Lauren doubled over crying any longer. I told her she needed some IV pain management as soon as possible. The resident said she was making a suggestion and would wait to hear after rounds. I snapped and got upset, nearly crying, and said Lauren was breaking down and couldn’t wait. I asked her to page Dr. Abromowitch and get something immediately. I was so worried about Lauren.

Dr. Abromowitch and the supervising resident, Dr. Egbarts were wonderful. The new resident did a good job and took mama bear’s word and got right on it. You always need to trust the moms, they know when their children are getting really sick. They started Lauren right away on IV morphine. Her friends Emmy, Kiley, and Lucy came for a short visit. They knew she was getting sick and and stopped in to see her. Lauren didn’t really visit, she fell asleep and they left. She was still glad they came. It is so important that she sees her friends. As I was coming into the room, the nurse said that Lauren was spiking a fever and we needed to get blood cultures drawn to test for sepsis. (Sepsis is bacteria in the blood. It can be life threatening and is a very big risk and cause of death with pediatric cancer patients.) Lauren had to be drawn from her central line and her arm to make sure that the bacteria isn’t coming from an infected central line. That is horrible if it is because then they have to take the line from her chest and then find another way to administer her fluids and blood draws. We protect that central line at any cost! An infected central line can mean a trip back to surgery to have another put in. Surgery is not a good option when you don’t have your own platelets or white blood cells. Lauren handled the arm poke like a champ. We were lucky to have Susan from the lab. I worked with her for 16 years and she is still here. She is an excellent phlebotomist. When she was done being drawn, she was able to talk to Mrs. Meysenburg, one of Lolo’s 4th grade teachers. She was able to do quite well and had a really nice visit with Joanna. She is a favorite teacher at SMM. She had Lolo laughing and smiling. I was so happy to see her smile and talk to Joanna. She needed to get her mind off of everything.

After Joanna left, the day went to pot. She spiked another temperature and got really sick. She had to be bathed and have her bed changed and she got sick again in the night. It was a very long night to say the least. We also got word that her blood cultures were positive. Lolo was septic. Luckily, Dr. Abromowitch predicted she was getting really sick and started pumping her full of fluids to keep her vessels dilated and prevent her from going into septic shock. Lolo went into septic shock in 5th grade the first time she had leukemia and ended up in PICU. Septic shock is scarier than I ever want to experience again. It means your vessels (arteries) stop being able to contract and move your blood through your body. In addition to pumping Lolo full of fluid, they had to give her a transfusion. They also got IV antibiotics going fast. All of this made Lolo eventually stable and not critical. Thank God, Dr. Abromowitch has the experience to make fast decisions and not wait. The combination of good medicine and Father Baxter popping in to annoint Lauren….and encourage her helped tremendously. Lolo has spiked fevers 3 times. The first time it was 102.4 and since then it has stayed down to 101 and 100.4. Thank God! This has made her weak.

Last night, I laid awake and watched her monitor all night. I stayed alert in case I needed to help her up fast to try and get to the commode. My mind wandered in the night. At times when she was asleep I broke down. I cried and it felt like a huge relief. I don’t let her see me break down because i think it scares her. I broke down because I am so afraid that so early in her being neutropenic (no immunity) she is already septic. We have so many days to go and she is already critically sick. It scares me of what else is coming. It is so unpredictable. But, I also started thinking of all we could do as a family if we get through these next few weeks. I started seeing a glimmer of the light at the end of the tunnel. I could see a speck. I couldn’t believe it could really almost be over. I started to long for my house and my dogs. I thought about all the things I wanted to cook for the kids and teared up thinking of actually sitting down to the table as a family all together again. I was happy that Jonathan was off at the Crane Ranch in Valentine with some of his close friends from when he was a little guy. He is still very good friends with Peter, Andrew, Sean, Charlie, and Liam….all great boys. They are off celebrating Andrew’s 18th birthday. The Crane Ranch is like Never Never Land…..and our boys are definitely the lost boys….they are probably running around the woods like hooligans and I know Martha is feeding my boy well. This made me smile to think what a good summer he is having before his Senior year.

Then, I started thinking of my friend and former neighbor, Valerie, that was probably awake all night long too. Valerie’s daughter, Anna Jane, Passed away this week after an asthma attack. She was 18….and beautiful….a talented singer….so young. Her little sister, Nina, played on Phil’s and my volleyball team. She was one of my little Girl Scouts. She and Anna Jane grew up on the block next to ours. Their mom, Valerie, could not be kinder and has had so many challenges over the last few years. She has worked so hard and is having to go on after losing her sweet child. I couldn’t go to the wake service because of Lolo’s downturn. I hoped the church was packed and the Abbotts know how many people love them. They have a GoFund me page. I hope people donate so that Valerie gets some relief and feels the support of our community. As I thought of Anna Jane, I also received some texts from another mother with a child with AML. Her child was not responding to treatment and was desperate for some advice. It was late and night. I was tired and emotional. I felt like the world was just full of sadness and tragedy. I had nothing to offer my friend Valerie or my fellow cancer mom. Grief laid heavy on my chest. I laid there for a moment and just watched Lolo breath and saw the profile of her face. I felt this overwhelming comfort that I can only explain as the Holy Spirit. I realized that I felt such grief when my dad died. I didn’t know how I would ever get through it. But, after he died, I felt his presence stronger than ever. I have always felt like he has been with me. As I looked at Lolo, I knew that we are never separated from our loved ones. Death is a heavy blow. In time, I trust, through love and support and Valerie feeling Anna Jane and the love she has for her around her, she will get through this. I somehow feel Anna Jane is looking over our community. Her sister, Lolo, and all of us. She knows she was loved. She is at peace.

This struggle to cope with grief also brought hope. It brought clarity. The frustration and sadness over the lack of response to treatment of this other tiny child brought resolve to me like I have never felt. It brought back into focus my purpose right now. I have been so overwhelmed I have lost my fight. I kicked into a fierce mode of planning my attack. I was strategizing the best support I could give Lolo to give her the best chance of staying stable. My goal….keep her stable….no heroics….focus on the basics. Don’t borrow trouble….love that saying from Barb Goodrich! What are the things in the next tough, hard weeks that I can work on and conquer. I came down to….staying diligent about scrubbing that damn room down and prevent more infection. I needed to be positive. I needed to be patient with Lauren. I needed to keep a close on her vitals and communicate everything to the nurses and resident. Keep her hydrated. I needed to encourage her when things are going well. I need to walk laps and knit. I need to pray my rosary. It is the attitude my mom and dad taught me. When life gets tough, roll up your shirt sleeves and get going. No sense complaining about the things your can’t control. It is like Phil says about war….you have to control the controlables…is that a word? It sure is a philosophy. I can’t keep thinking about how bad this is. I need to work hard here and control what I can and breathe and pray through the rest. It is the same with the heavy grief I feel lately. After our city lost two little boys within a week and now Anna Jane…..we have no control over these tragedies, but we can control how we respond to them. We can be immobilized by grief. We can be overcome with fear. Fear it will happen to us. Fear that we won’t ever heal. Or, we can take the feeling that puts us there….pure love and offer it out to the universe in some way. This week, I am also going to keep making small strides when I can towards our non-profit Lolo’s Angels. My kids’ school is already responding with love towards Valerie. I hope it keeps raining down on her and Nina. We can love her family through this. The establishment of Lolo’s Angels will be my answer to the frustration and anger I feel when I hear of baby’s like my new friend’s that have AML and are struggling to keep their child alive. We will make a difference and help these people. My answer to my fear of Lolo’s situation is not to keep crying and be overwhelmed by fear, it is to keep praying and work hard to do the things I know how to do. I need to keep moving in a positive direction. This rally cry was definitely fueled by the Holy Spirit in the middle of the night because I was praying as I watched Lolo to please help my heart that was so full of grief and fear. I begged God to show me the way. I don’t know what is going to happen, but I just feel strongly that my sweet girl is here for a reason and she has to get better.

As I started to feel some relief, I reviewed some of the drawings online that a Disney animator had emailed me. He is doing the sketches of our prototype…our Lolo’s Angel character to go on our brochures. We are going to tell a story and have a heroine. He is drawing Lolo…..the snow angel….a fierce teenager, with a sweet freckly face, with wings and a sword….that through her courage and bravery she inspired other people to fight for other kids. Oh yes! We can do this. I had fun imagining this personna. Our new friend’s sketches are something to behold. I can’t wait to share them.

Also, because of Lolo and all the love shown to her in the form of hosting bone marrow drives….over 500 new people have been added to the bone marrow registry. Our friend, Carol, at DKMS, have been on the ball. The bone marrow drives haven’t stopped. On July 12th, Green Plains, Inc. is hosting bone marrow drives in 9 states because their CEO Todd Becker was inspired by Lolo’s story. This company will make a difference in so many lives. This is something we can control. We can make sure that no one gets through all the treatment and needs a transplant and doesn’t have a match. We aren’t done. We need to ask companies like Green Plains to make a commitment to do drives once a year. We need to keep asking companies to host blood and bone marrow drives to help people like our Lolo survive.

It is weird, Lolo didn’t know that she had a birthmark on the back of her head until the other day. My friend, Kim, took a picture of it. She thought it was gross. It is a pink birthmark. I knew she had it because I saw her bald little head when she was a baby. Is it any coincidence that the birthmark is shaped like angel wings? I don’t think God is intending Lolo to be an angel in heaven. Catholic teaching says that angels are not humans in heaven. They are spiritual beings. Lolo is definitely a spiritual being here on earth and she inspires us to be better humans to love and help others.

She isn’t steady on her feet right now and is having trouble maintaining her blood pressure. It goes up very high and then goes too low. This morning after she received a platelet transfusion she slept. She slept most of the day, waking very little. Because she is septic and the doctors are concerned about her heart, she had a echocardiogram this morning. When she was sleeping really good and the pain was managed, she slept like a rock. I kept thinking how good it was that she could rest. My goal for the next week will be to keep her stable and let her body rest. I was very relieved when the cardiologist, Dr. Spicer, came in to let me know that she is holding her own. Dr. Spicer is a great guy. I met him on the elevator years ago when Lo was in 5th grade. I told him he looked more like an FBI agent than a doctor. He laughed. He is head of cardiology and ended up being Lolo’s cardiology consult. He looks like Dr. Coulter and is kind of a kook like Dr. Coulter. He is also a brilliant doctor. He gave me a lot of confidence because he said he is keeping a close eye on how Lolo’s heart is doing through this last treatment.

Unfortunately, we also got some bad news. Lolo has bad blood; she has E coli sepsis. She also has neutropenic colitis, meaning her intestines were stripped from the chemo. Because of all the antiobiotics she was on last cycle of chemo, her test for C. diff (Clostridium difficile) also came back positive. This causes ulcerative colitis. Lolo is in a world of hurt. Her condition is guarded and she has a lot of eyes upon her. I was also told that because of the nature of the chemo she just received, we shouldn’t expect neutrophils to show up on day 21 like we thought. This blow put me in a tailspin. I keep taking this news stoically and prepare myself. I am scared, yet determined that she can do this. But, it is looking more like a 35 day hospital stay, instead of 28. It is looking like our first neutrophils won’t be on day 21. Oh, God, let her stay stable for the next 2 weeks. Please, help her!

She has had so many things pile up, she just can’t have anything else happen. She is getting treatment for the sepsis and the C. difficile. Her poor intestines are so very painful, I hope the morphine keeps working. I hope another infection does not set in. I hope her blood pressure can stay stable. I hope her intestines don’t break down more. She hasn’t eaten but a few bites in days. It looks like she will have to have a feeding tube inserted soon. This will make her mad as a hornet. Until then….she is sleeping….so, I must rest too.

She can do this. Fight to the finish my little warrior princess!

#GoLoloGo