I’ve tried writing on your blog several times in the last few months but the posts always seem to come out sad and melancholy and I know that is not what you would want. So I never post the final draft. It’s been a year since you took your last breath. One year since I was able to kiss your face, hold your hand, feel your body against mine. Your scent left on the pillow I hugged for months is gone. The pain of the last eight days of your life still lingers.
The Last Eight Days
We decided on July 31st that we would check in to George Mark Children’s House, a pediatric palliative care facility. The plan was to stay there until we could get our house moved to Rancho Cordova and Lauren’s bedroom set up through hospice. I was sure that the climate in Reno, the elevation and the dust that we were stirring up while packing was wreaking havoc on her breathing. By this time, she was on a Dilaudid pain patch, liquid Oxycontin every 4 hours and breakthrough when needed. I had shown her the videos posted on the George Mark website of the facility and she told me “Mom, I am ready for you to just be my mom. Please let someone else take care of me.” So the decision was final. We would leave in the morning.
We left for George on August 1st. It was a long drive down and the anxiety of Lauren being on high level oxygen and the chance of the tank running out weighed heavy on me the entire way (yes, I know I had like 10 extra tanks in the back, but I was still stressed out). I was happy she got comfortable and slept most of the ride down. After getting settled in and meeting all of the staff, I took her for a stroll outside around the grounds. There were so many beautiful flowers, a fountain and an amazing chapel built next to the house. She couldn’t resist playing her favorite song on the organ in the chapel and I couldn’t resist recording it. It is one of my most cherished memories. As I pushed her around the path, stopping to smell the flowers, she said “This place is beautiful! Can I die here?”
We got a visit from two of our favorite nurses from Children’s the next morning. They had arranged for Lauren to throw a slushy on one of them to mark another item off of her bucket list. After cleaning up, Connie called me into the hallway and delivered the bad news (man it must suck to be her sometimes). The tumor had grown too large and radiation was not an option. Lauren would have hours to days left here on this earth. I called Jim and told him to drop everything and come down, and the same phone call to my mother and Tyler. Get the dogs and get here ASAP. GM has a one bedroom family suite and they would stay there. We had papers sent over from the vet to allow Lola into the facility. Once again, Lauren and I embarked on a stroll around the grounds. We stopped in front of the chapel and I told her the hardest thing I have ever in my life. “This is it honey. There is nothing more that the doctors can do for you. It won’t be long.” We cried that day like we have never cried before. But somewhere in that lost desperation of hope, I knew that we would both be okay.
Lauren asked her three best friends to come see her on Saturday, as well as her second mom Michelle and her 4th grade teacher/mentor/confidant Sue (she loved to call her Sue instead of Miss Lackey). I stayed out of the room for most of the day, wanting her to be able to have private alone time with them. They too broke her out of the stuffy room and pushed her around the grounds (although I am sure they pushed her much faster than I ever did). It was tough to share her that day, but if ever there was a time to be selfless, it was now. I will forever cherish the smiles on her face that day. We made plans for them to come back in the next couple of days. I would text them and let them know how she was feeling and if she was up to visitors.
She had a difficult time on Saturday night getting comfortable and we began making plans for heavier sedatives, when the time came for them to be necessary. The decisions we made regarding her care in the last days of her life were the hardest ever. I knew in my heart that she wanted to be awake and aware, but her inability to breath without assistance and then sometimes, even the oxygen wasn’t enough, and watching her gasp for air was too much to bear. By this time, we were all sleeping in the room with her and only Mom was staying in the suite. When she was awake, we wanted to be there for every single minute so we took turns walking the dog, etc. We also gave her a little extra time with her brother. At times she would wake up and if ask for him immediately, “Where’s my Tyler?” It was beautiful and heartbreaking. As hard as it was, she was also requesting no more visitors. It was important to her that her friends not see her like this. She didn’t want them to be sad or scared. She always thought of others before herself.
By Monday the discussion for heavier sedatives became more immediate. Her breathing was more labored and she was waking more often gasping for air. We tried several different masks, but none seem to be getting her enough to feel comfortable. Tyler’s girlfriend Danielle arrived via Greyhound early in the morning and they spent the day talking and laughing and goofing off. I can’t even tell you how heavy my heart felt each time one of these kids would tell her goodbye. I knew what it meant and it hurt even more knowing the pain they were feeling too. We began the Phenobarb on Monday night. We were told that this would put her in a conscious sedation but would also help with her breathing. Unfortunately, we realized too late that she would need a dose strong enough to knock out a very large man when she became combative in the middle of the night. This would not be the last of many episodes where clearly, Lauren wanted to be in control.
On Tuesday morning, we decided to access Lauren’s port. Up until now, she had been taking all of her medication orally but because of the stress she was under, we thought it would be better to be able to give her instant doses of her medication instead of waiting for them to take affect orally. It would also allow us to give her larger doses of the Phenobarb. She was comfortable and was still waking up several times a day. In the afternoon on Tuesday, she woke very groggy, pulling at her oxygen mask to get it off. The sedative she is on makes it difficult for her to communicate verbally. We cannot understand what she is trying to say and she is becoming agitated at us, more so me. I grab a pen and paper, as if she would be able to write her wishes instead. After a minute of her yelling and us scrambling, we figured out what she was saying… “Am I ever going to be normal in HERE??!!” My heart broke right then and there. Never have I ever felt as helpless as I did in that moment. That evening, as the sedative started to wear off, she woke up requesting applesauce. I ran down to the room and grabbed the first one, a peach/applesauce combo. She knew immediately as Tyler fed her the first bite that it wasn’t something normal like and spit it out. Then proceeded, for the remainder of the time she was awake, to tell us all how much she loved Tyler and Jim and kept flipping me the bird. That’s my girl…
Early Wednesday morning, Lauren woke again in a combative state. After minutes of us scrambling, including the wonderful nursing staff at GM and me having to get behind her and hold her down, we deduced that her port was no longer working and had shut down. While I was holding her down, our amazing nurse started an IV on her (first try!!!) and moments later, she was comfortable again. We can only speculate that the tumor was pressing on the port site and caused it to stop delivering meds. Talk about one pissed off teenager… The rest of the day was spent hanging out in her room, watching TV and just resting. That evening, I played all of her favorite songs from her iPad and sang along to them, laying next to her on the full size bed they had given us to use so that all of us could be in there with her. She requested it the first night so that I could sleep next to her. She never was much of a cuddler (eww, you’re my mom!!!) but in the last month of her life, I got more cuddles than I had ever asked for and I loved every single minute. That night, Tyler kissed Lauren goodbye and left to sleep in the suite with my mother. With Jim on her right side and me on the left, we held her hand and whispered we loved her and told her that it was time to go. We did this several times throughout the evening, hoping that she would trust us and know that we were ready and she is too.
I was sitting beside her bed, holding her hand with my head gently laying beside her shortly before 8am when Jim tapped my shoulder and as I raised my head, he pointed to her right arm, which had become swollen (tumor pressing on vena cava). I stood up in my chair and said “WHY GOD? WHY ARE YOU MAKING ME WATCH THIS? I DON’T UNDERSTAND WHY YOU ARE LETTING HER SUFFER??!!!! PLEASE!!!” and at that moment, my beautiful amazing baby girl took her last breath. Forever 16.
2 thoughts on “The Last Eight Days”
My heart breaks for you. Tears are flooding my cheeks. On July 16, 2014 we lost a young woman in our family to Crohn’s disease. Her passing was unexpected, and in her case fast. It is believed that she passed a blood clot, but could not be confirmed because she wanted to be an organ donor more. I am truly sorry. Lauren could never have been loved more. She is with you every day, every minute. Find her signs. It will make you smile once again.
What can I possibly say? My heart aches as I read this and the tears are falling. i still pray for you and your family.