Lolo is stable. We are still in Room 613. It is a miracle we didn’t end up in the PICU over the last few days.Lolo just went through a critical scare and is stable right now. She has a big fight on her hands for the next couple of weeks. I cannot sing Minnie Abromowitch’s praises enough and how on top of Lolo’s care she is. I am thankful to all the residents, the nurses, and all of my friends and family. I now the combination of all of your prayers and her incredible medical team has saved her.
Lolo is stable right now. It is Day 13 and she still has no immunity. She isn’t talking much. She was able to get up to get to the bathtub last night. This was a huge step. She is hooked up to monitors 24/7, which is difficult. She can’t get to the bathroom, so she has a commode right next to her bed. She is very weak, but her fevers have stopped (knock on wood). This means the antibiotics must be killing the bacteria in her blood. She has C diff, which has caused her to have ulcerative colitis, so she is still on morphine. They had to increase the morphine levels yesterday. She is now on a pump so that she can control when she gets more morphine.
Yesterday, early in the morning, I had a visit from Sandy Kmiecik, Emmy’s mom. Sandy is a nurse and has known Lolo most of her life. Lo is comfortable with her so I took a long bath while Sandy sat with her. I don’t feel comfortable letting anyone sit with her because of privacy for her and her medical condition is unpredictable right now, it is stressful for someone that doesn’t understand all that is going on with her. Phil came up and then sat with Lauren while Sandy and I escaped to the wonderful cafeteria….that is said facetiously, sorry, Children’s, but the food is oh, so bad…oh, so bad. Plus, I ate it all those years I worked her, so usually I can’t stomach it, but they had some hot oatmeal cooking and it tasted delicious! Our family, when I was growing up called oatmeal “mush;’ and we loved it. My kids aren’t as fond of it as I am, but it sure hit the spot for me. I went over everything I was doing in the room with Lolo to keep her stable and asked Sandy if I should add anything. She is a good sounding board.
I am glad Children’s added respiratory care to Lolo’s day because she needs to prevent getting pneumonia by moving her lungs. When you are sedentary and barely moving, especially with no immunity, pneumonia can set in. Lo thinks I am a total pain in the butt; she is right, but someday she will realize that my pain in the butt has kept her moving forward. Dr Abromowitch also ordered PT in the bed for Lo. Lo was annoyed, but was very good at getting her simple “in bed” exercises done. She is a good patient and does everything she is supposed to do to fight getting sick. I admire her to learn as she goes. Once she knows something, she makes sure to do it. It is amazing that she has only had mouth sores twice, knock on wood, through all of these months of chemo, this time and last. The doctors are impressed that she doesn’t get them because they expect her to. We make her keep her mouth moist on the clock, drinking, or even just moistening her mouth, when she is nauseous. She also brushes her teeth with her special brush. She has to use a special toothbrush because even the soft ones at the store are not soft enough. Without platelets, any rubbing of her gums causes her gums to bleed, which can be a source of normal mouth bacteria becoming opportunistic and causing a bad infection. She also keeps her whole array of lip moisturizes right at her disposal. She keeps those puppies covered with moisturizing lip balm at all times. These may seem like little things, but they aren’t. Any split lip or open sore, scratch, etc. can lead to an infection that she can’t fight. My girl knows her enemy.
How we ended up in the room, is pretty wonderful. Just the timing? Room 613 was the first airflow room we were in and was the room that Lolo was confirmed in. Archbishop George Lucas and Father Weeder were there together to confirm Miss Lauren on April 30th, 2016. Father Val Peter blessed this room with holy water and brought Lauren a gift in this room. It was a cross once owned by Father Flanagan. She has had interesting dreams in this room. We have Father Flanagan’s cross in the room along with rosary beads given to us by various people, including rosary beads that I use to pray the rosary with given to Lauren by Archbishop Lucas. These rosary beads were given to him by Pope Francis when the Pope came to the United States. For my non-Catholic friends, these objects are not worshipped by Catholics. Nor do we worship Mary. These objects are tangible reminders of the presence of Christ…..like the beauty around us in nature, or perfect harmony in a song, the light coming through a stained glass window. The fact that a cross once owned by a holy man like Father Flanagan was given to Lauren gives us hope. I recognize the presence of God even in my child’s suffering and I know He is with her.
Father Peter told Lauren that Father Flanagan has appeared to students at Boy’s Town over the years when they have needed someone to help them. I pray to many Saints to intercede for Lauren. I pray for my family that has already passed to be with Lolo. I pray to Father Flanagan to intercede for Lauren and ask God to heal her of her leukemia. I believe he is listening and He is listening. Phil think I am a kook, but smiles when he says it. For my friends that believe as I do, please pray to Father Flanagan on Lolo’s behalf. Also, pray to her confirmation saint, St Therese of Lisieux. For my non-Catholic friends, we don’t worship saints or place them on the level of Jesus/God. We believe all of the saints in heaven listen to prayers and can “intercede” or in a way, pray with us, add to our prayers.
This experience makes me think that is why Lolo doesn’t let me hold her when she is at her sickest. When she is critical, she doesn’t even want me to touch her. That isn’t like Lolo. She is a snuggly little cuddler. I went to talk to Father Baxter, our pastor at SMM, when Lolo was home. I rambled about my worries and how hard this is. He was so kind and offered brilliant counsel as I find most of the wonderful priests I know do. He said that I have to trust Lolo is in a different state (not as in US state) but experiencing something we can’t understand. She is quiet and she is with Jesus. She is being held in prayer by so many people. Yesterday, about 50 people from our parish prayed a rosary outside our window……way down on the street. We could see them from the 6th floor and waved. Lolo was too sick to get out of bed, but I showed her a picture of them. It made me weep, which made her mad. But, I felt the prayers of all of them. They held us up yesterday. I can’t think of a more special gift. They walked around Children’s Hospital as they prayed. I gave my friend, Sara, a list of other kids with cancer that we have met on the floor to pray for also. They also prayed for all the kids at Children’s. This is the kind of people my kids grew up with. Some of the people that showed up barely know us, others that showed up are very close to our family. But, they are all our parish family, which is wonderful. All of us in this world need the support of family and friends. We need to feel connected and loved. It is just as awesome to be the one that is on the giving side too and be able to help other people. At this time in our country when people are feeling disconnected and pulled apart, it is a breath of fresh air to feel such positive and loving support.
Sorry to ramble about all the religious stuff. It is way more than religion and I hope I am not sounding preachy. My intent is just to tell you about our experience. I respect all of my friends of various religions and beliefs. In addition to my friends that pray the rosary is my sweet and beautiful Muslim friends from my knit circle that offer fasting for Lauren during Ramadan. I have my nature loving, yoga loving, non-Christian beautiful friend that sends out her love and thinks of Lolo all the time. Love is love is love is love is love….it is all God to me.
I believe Father Baxter is right. I believe Lolo is in another “state.” She is in a state of grace. She is already being held by Jesus as she suffers and fights this leukemia. She is being held in prayer. Therefore, she is defensive and resistant to being held and touched by anyone else. Father Baxter also told me to not worry that she is going to be withdrawn when she is out of the hospital or to try and push her to have friends or people around her. He said to trust her that she knows what she needs and to trust God. I am thankful for his advice. I do trust her. I am also learning to trust God, at least when she is stable. I admit, I am fearful when she gets so critical. I am sure any mother would be.
Thank you to every single person that has helped our family along the way, especially now. People have helped in too many ways to list. The kind comments, cards, prayers, gifts to Lauren, the wonderful Go, Lolo, Go signs and videos, and especially those rosaries all mean so much to me. I am especially grateful for the people that have run blood and bone marrow registry drives. I am writing a blog under “Ocean” right after this that addresses those drives and gives you back the statistics about them. I am humbled by the request for people to work with DKMS-Delete Blood Cancer to host bone marow drives. You are helping our family; you are also helping others. I hope to set some goals of having more of these. Please read the other article I am going to write. It should end up being posted today. Please also consider attending one of the many drives that Green Plains, Inc. is having across the country on July 12th.
Today is Day 13. Her bone marrow should start up again and try to produce some white blood cells somewhere between Day 21-28. So, we are in the weeds until then. We are hacking our way out of the weeds with everything we can do, but we are still in the weeds. Keep those prayers coming!!! Much love to all of you!!!