The Last Eight Days

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.

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Happy Dia De Los Muertos

You can check out pics of Lauren’s altar for Dia de los Muertos/Day of the Dead (a Mexican holiday –  folklore/tradition says that the gates of Heaven open at midnight on November 1st for all the children that have died to be reunited for the day with their loved ones. The following day, the adults come down to earth to celebrate) at the link below on Tumblr.

Dia de los Muertos – Lauren’s ofrenda (altar)

Lola’s Bucket List – Run the NYC Marathon

While this wasn’t exactly on the list, I know that it would have been something that Lauren would have loved to have added to #LolasBucketList

Our dear friend Scott ran with #FlatLola on the back of his cape, “On the wings of an Angel” <3 in her memory <3

My friends never cease to amaze me! Thank you Scott! xoxo

#LoveLikeLola #TeamStupidCancer

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Lola’s Bucket List – Get My Port Removed

Nancy is my hero. While we weren’t able to physically make it to Florida back in July for NB to help us out with #LolasBucketList, she continues to amaze me by crossing more and more items off the list.

Lauren wanted to get her port removed so badly. Though I tried to avoid the conversation, she knew deep down that it would be 1) too dangerous for her to go under any general anesthesia to remove the port and 2) we might (and we did) need to use it to administer medication at some point.

Thank you Nancy for taking Lola along with you!

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Highlight Video from Lola’s Celebration

Tuesday marked two months since Lola passed away (GOD I hate that term, but “died” isn’t a word I will EVER use because she DID NOT die). The days are longer than ever and I often find myself lost and confused. It still seems very surreal. I tried to unpack and reorganize all of her stuff and I got as far as opening the lid of the first box. I’m not ready.

I am still getting messages from complete strangers on how Lola touched their life or my favorite, testimonials that she has been visiting more people than just me <3

My mom will be going back to Texas soon and I hope to get a part time job before she leaves. I am not afraid of being here in the house alone, but others are … go figure. So between the creation of The Love Like Lola Foundation and a part time job to take up my time should be just what the doctor ordered for my own personal grieving process. I am so psyched about getting started on the foundation and carrying on Lauren’s legacy, something she was very passionate about.

Below is the video link to the “highlight” slideshow of Lauren’s Celebration of Life … better late than never right? =) As far as I can tell, the video is NOT available via mobile (sorry, copyright infringement issues on the song I chose to play at the end). It will be best viewed on your laptop or PC. Thank you to everyone who came out to honor Lauren. The Celebration was amazing and literally standing room only. A special thank you goes out to both Erin McHugh and Allison Pack for organizing the #EatLikeLola potluck and to everyone who brought one of Lauren’s favorites food items. (We are STILL eating pudding cups!!!) I’d also like to thank Nicole, Alyssa, Sierra, Lexi and Jason for your GREAT “Lola stories” and kind words and Avery and Eldon for their beautiful performances. We were so touched by all of you.

Tribute Video

Below is the tribute video that we played during Lauren’s Celebration of Life — it was originally about 50 minutes long, so I have broken it down to three different videos. I know they are long (about 15 mn each) but so worth it. I really worked hard on getting the right music to go along with the pics. Enjoy =)

Part 3 may not be available (as of this writing) via mobile because of music copyright laws. I have disputed it (usually resolves within 24 hours or sooner). So if you can’t view via your iPad or smartphone, please check back later or change over to your computer/laptop to view.

I will be posting pics and video of the celebration itself after I get everything in one place and have some time to compile it all.

#LoveLikeLola

Swim With Dolphins

Thanks again to Nancy Beth, who marked another item off of #LolasBucketList and honored her on the day of her Celebration of Life by swimming with the dolphins at Atlantis!

Nancy Beth and #FlatLola swimming with the dolphins at Atlantis

Nancy Beth and #FlatLola swimming with the dolphins at Atlantis

Nancy Beth and #FlatLola swimming and loving on the sea lion

Nancy Beth and #FlatLola swimming with and loving on the sea lion

Spa day with #FlatLola and Nancy Beth at Atlantis

Spa day with #FlatLola and Nancy Beth at Atlantis

Thank you NB for always remembering to #LoveLikeLola and for honoring Lauren’s memory by helping her with complete her bucket list. You are an amazing and awesome friend!

More Yoga on the Beach

This is from Team Lola’s Facebook page

From Maya:

Lola, your life is an inspiration. Thank you for helping me live life to the fullest. I know this was already done but here is one for your beautiful bucket list, YOGA ON THE BEACH!

Thank you Maya!!! #LolasBucketList #LoveLikeLola

Maya doing yoga on the beach for Lola <3

Maya doing yoga on the beach for Lola <3

Get MORE tattoos

We met Tamara and her daughter Marti, who is fighting CML, at the Stupid Cancer OMG Summit back in April. There was an automatic connection! We stayed with them while we were in OC/LA and the girls bonded so quickly and made a life long friendship!

Tamara has a mini white board on her fridge, so of course Lauren had to leave her mark. Marti took that “signature” today and had Dan Smith, of Captured Tattoo in Tustin, tattoo it on her.

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We met Brad and his parents in Reno through NNCCF. Brad is a cancer survivor. Lola and he became friends over text messaging and social media. He designed a tattoo in her honor as well as getting one similar to the infinity sign she had her on wrist.

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Thank you Marti and Brad. Lola would be so amazed and humbled, as we, her family, are <3

Go to the Fun. concert

When Lola first posted #LolasBucketList, a few awesome people contacted me about getting her tickets to a Fun. concert. What they didn’t know is that what she meant was “live long enough to go to the Fun. concert that she got tickets for on her 16th birthday in May”. Tyler and I took care of that for her last night =) It was definitely bittersweet, and I had to choke back the tears, but we had a blast!

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Please bear with me while we are still in the process of unpacking and such. I use my PC for graphic edits, etc. and it has yet to get setup — so I can’t “cross” stuff off of her list until I get my PC up and running.