6th floor nurses get Lolo ready for a proper send off.

On Monday, July 25th, 2016, Lolo left the hospital and came home! It didn’t even seem real that she was really done and ready to be back at home. I couldn’t believe it. Today, it is still soaking in. I threw out that date a while ago saying that was when we would come home, but I was told that we wouldn’t go home until around Day 35 of her treatment. Yesterday was Day 28. Her ANC was 330, not quite 500. She is still very anemic and will maybe need a transfusion in a couple of days. She is eating some, trying very hard to handle the nausea. I go upstairs and wake her up and make her drink every couple of hours. She has a whole smorgasbord of medications to take at different times throughout the day. She is absolutely worn out. But, on Monday morning, bright and early, when Dr. Beck came on as the HO dr for the week, she said Lolo should be able to get ready to go home. Lolo added, “Today?” Dr. Beck told her what she would need to do to go home that day…..and my Fearless Warrior Princess rose to the occasion. She asked for her pain med pump to be turned off immediately. She asked to be switched off her IV anti-nausea meds.

Lolo and her Occupational Therapist, Carissa, walk an entire mile on 6th floor.

She was told she needed to walk, so with the physical therapist and nurse, she walked an entire mile, which is 13 laps around the 6th floor, dragging an IV pole.

She received her last nourishment as TPN later in the afternoon and she ate as much as she could hold. To get maximum calories, she sent Jonathan to Cali Taco for a big, fried taco! She worked hard at it and polished off ¾ of a taco. Pretty good when you think that she has had mostly liquid nutrition for over two weeks. Lolo wanted to go home!

Her strength amazes me. She has lost weight and has many weeks of recovery after being as sick as she was. She will rest at home for the next couple of weeks and will not be able to be out in public until her counts rise a lot more than where they currently are. She can have friends visit, however, today, she is so exhausted, she asked that no one visit. She knows she needs to have uninterrupted rest. Yesterday was the day back in history when Father Flanagan of Boy’s Town was ordained as a priest. It was also the feast day of St. James, Father Weeder’s namesake. I guess I should have known that Lauren would have been receiving extra strength on such a day. The combination of her incredible team of doctors, nurses, and medical staff with the love and support of our family and friends, not to mention, the beautiful & powerful rosary that was said for her last week, has surely resulted in Lolo’s recovery. I cannot deny that her shear fearless, determined, and positive behavior is also a large factor. The Dalai Lama encouraged Lauren to have a positive spirit and to keep her mind strong. She and the Dalai Lama have a lot in common. There were a lot of pictures taken of Lauren last week. In each picture, she is as pale as can be. Most days she did nothing but sleep.

The night Lizzy Stivers came to see her, Lolo had a hard time staying alert and not falling asleep. She had quite a bit of pain. But, she was so happy to see Lizzy, she worked through it and was present with Lizzy. The picture of the two of them says it all. Lolo’s smile lights up a room. I am so proud of her. I know it has made a difference in her ability to survive what has been unsurvivable for some, both medically and emotionally. I have high hopes for Lauren that she will fully recover and be able to leave the pain, fear, and isolation behind. I hope she also never forgets how much she is loved and how supported she was during her hospital stay. I hope it helps her as she is not done fighting. We need to get her well. She also still has radiation ahead of her. We won’t know the details of this treatment plan until next week.

We are still settling into being home again. Phil took today off and is helping me unpack. Jonathan, Phil, and I did some gardening this morning while Lolo slept. Things like weeds in our garden have obviously gone by the wayside, but we don’t want to look like Boo Radley’s house, so we made some progress this morning. I loved it. After what we have been through it doesn’t surprise me that I was thankful just to be doing yardwork with my husband and son while my daughter rested peacefully in her own bed. Small things to some people are celebrations for us. I opened my blind in my bedroom this morning to look out into my own yard. Just seeing my cat in my own surroundings made me cry. I probably won’t leave my house for a few days. It is the best! It is pretty wonderful to have some solitude also. Lauren has said that this afternoon she wants us to leave her alone. She isn’t being bratty or ornery at all. She has had someone come into her room all day long, check her temperature, her blood pressure. She has been hooked up to an IV pole for a month. During the last few weeks, she has been hooked up to a heart monitor, 02 saturation monitor, and monitor for her respiration rate. That meant that other than her nightly bath, where she still had to have the IV pole right outside the tub, the other monitors were always hooked up. It was actually hard to sleep last night because I am not used to sleeping all night without someone walking into the room throughout the night or hearing either her IV meds beeping or her monitors indicating something was going on. I had to wake up in the middle of the night and watch a TV show for a while because I couldn’t get back to sleep. It made me pretty dang happy to lay in my bed and watch “The Mindy Project” and laugh and be all cozy. I can’t imagine what my sweet daughter is feeling. I know Jonathan is getting tired of me hugging him and kissing him on the head. There is no place like home! Best thing ever!

Lauren has to go in to her doctor a couple of times a week for the next month. We will find out what the plan is at that time. We will be getting her ready to start high school. Our hope is that her immunity will improve along with her strength and that she will be able to start high school on the first day. This is her big goal! Please, keep praying for her.

Lolo’s Angels will continue to work hard to raise money for AML research. We are a non-profit under “Sammy’s Superheroes.” None of the money raised will go to our family. There was a question about that, therefore, I want to be clear. All of the money we raise will go into a fund that we will donate directly to cancer research once we meet our goal of $125,000.00! Please, continue to make donations on our blog and help us get there. We will run bone marrow drives. We will increase advocacy and awareness for pediatric cancer. We are working very hard in the state of Nebraska to have a political voice both locally and nationally. We will also support a pediatric cancer mass on 12/12/16 for the Feast Day of Our Lady of Guadalupe. Our first public event will be at Dundee Days on August 27th…..more details to come. We also have some other really fun fundraisers coming up for the year….more details to come! Our logo is almost complete and we are excited to unveil the logo this week.

We are still looking for a company to underwrite the cost of the t-shirts we would like to sell to raise money for research. If you know of a company, or your company is interested in helping us, please email me @[email protected]. Together, we can make a difference, one small step at a time. Curing pediatric cancer seems like a daunting task, but we need to be fearless like Lolo and all these kids with cancer. If you watch a child suffer through cancer, it changes you. It makes you realize your purpose and it makes you have the courage to go after it.

So….that being said….need to make a bowl of ice cream with berries for my hard working son before he heads off to work……almost giddy that I get to hang with him for a minute…..So lucky to be a mom and a wife….and a fearless cancer fighter just like Lolo.

#GoLoloGo

Sunday, July 24. First time outside for 27 days. Playing Mancala with Dad in terrace at Children’s Hospital.

Terrace time with Mom, Dad, Kim & Kiley Root