In the Blink of an Eye

I have really had a hard go of it finding time to update my blog. It's easier sometimes to just post short updates on Facebook, which by the way, I have created a "fan page" for Lauren just for this purpose. So, if you are on FB and haven't done so already, please click the link above and "like" Team Lola's page. =)

Lauren started Doxil on Tuesday, November 27th. We had an awesome visitor (remember Clayton? His mom Danielle and sister Ellie came to visit. Clayton became an Angel on July 11th of this year) who took the edge off of port accessing and the first day of chemo. We stayed in the exam room for the beginning of her infusion because the infusion room was full, by a bunch of dudes! You'd think she'd want to be out there surrounded by guys, but not today. About 10 minutes into the infusion, the pump started going off (My fellow momcologists can relate -- the beeping is NO fun. Of course we know how to silence it. Hell, Lauren even knew how to get rid of the occlusions on the pumps in Oakland). About an hour and a half later, they finally decided to replace the tubing (which meant drawing out the Doxil with a syringe and putting it back in the reservoir). We were there for most of the day - an hour to exam and access, occlusion issues lasting almost two hours and then an hour or so for the actual infusion... As the boys started to go home, we decided to move out into the infusion room. It was stuffy in the exam room with the stupid pump beeping and a couple of nurses trying to fix it.

We have two major concerns with using Liposomal Doxil. The most important and scariest is the cardio toxicity. We are using Trental to help protect Lauren's heart, but according to long term stats, she could experience issues later in life, as an adult. The other concern is severe mucositis. Full blown mucositis in the mouth looks a lot like a horrible case of thrush. We want to keep this at bay mainly because now that Lauren has braces, the breakdown of the tissue in the mouth coupled with the braces may cause cuts/tears that will make her more susceptible to infection. All of the Anthracyclines are known for this and I'd say Lauren had about the worst it can get with the first protocol she was on. It doesn't just affect your mouth, but the entire digestive tract from beginning to end. It's a very common side effect in cancer treatment and the hardest to control. In fact, there really isn't any prevention like Zofran is to nausea. So far she is almost two weeks out from the infusion and has only mentioned some lingering "mucositis like" symptoms a few times. She also started the Etoposide the same week as the Doxil, except it's oral. This is the first oral chemo she has taken and lemme tell you, it's also the cheapest! I am giving it to her at night before she goes to bed so theoretically she sleeps through the worst of what could potentially be some icky nausea and vomiting. So far, she is tolerating it as well. I am trying to stay ahead of the waves of nausea but using Zofran and ginger tea. Her appetite is small and as of last week was dehydrated. A few bouts of dizziness and anemic type symptoms had me worried that she was low on red blood, but her skin's pink tint told me differently. Her hemoglobin was above 14 which made if very clear that she was dehydrated. Onc #1 ordered her to drink three liters of water a day (that's six 16.9 oz water bottles) or IV fluids at home/clinic. The very same day, after pushing her to drink and drink and drink summore' she finally started feeling better. She has also lost 4 lbs and her blood pressure was low. Other signs of dehydration. I've been pushing her (putting numbers 1-6 on the water bottle lids to keep track of what she is drinking) and she has been feeling much better.

You all know how much Lauren and I love Stupid Cancer. Well, we were invited to come on their weekly radio show on the 26th and I have to say it was really fun. My first blog post here was on the OMG2012 Cancer Summit for Young Adults. I am happy to report that I have been asked to be a panelist at OMG2013 on the Caregivers for Teens session and I am beyond excited. Lauren has already started making plans with friends she met last year for "after hours" activities. Here is the link to listen to the radio show.

I've also been dealing with the school situation for Lauren for a few weeks now. She has been enrolled in the re-engagement program here in Reno since September. This program is temporary until they find a place that suits you within the school district. It's really designed for dropouts as they help you earn back lost credits and try to get you "re-engaged" in high school and your education. She started the A+ program, which is online school with onsite tutors if you need them. For almost a month the classroom site was down and then I received a call from the director letting me know that they thought since Lauren wasn't coming in that she would do better with home hospital (a teacher comes to your house for five hours a week and you do curriculum from your zoned HS). Whatever. Honestly if it wasn't against the law, I'd say who cares and not even worry about school. It's very clear that she does not want to physically go back to her zoned HS. She wants to get her GED anyway. The unfortunate part is that because she has missed so much school, she is in no way ready to take the GED. At the very least, she'd need instruction/tutoring to prepare her to test. I finally had two meetings with a counselor at the Washoe County Innovations HS. She is recommending that Lauren have home hospital with the option to do work online. This is a new program that they are trying out for Lauren and one other student. We have a 504 planning meeting on Tuesday so I hope she can start back before Christmas break. Washoe County School District does not do anything quickly.

With all of the appointments and errands I've been running lately, I have been a little overwhelmed. I have a huge white board calendar in the kitchen and everything always goes in my iPhone calendar. If it doesn't, I will most definitely forget it. Last week was Tyler's 18th birthday. Oh my God, I blinked and my adolescent son was a young man. Jim's grandpa gave Tyler his car for his birthday (a 1994 Oldsmobile Cutlas - made the same year he was born) and we actually pulled off the surprise. I'll be taking him down to the DMV on Wednesday for his driving test. I still can't believe he is 18! We've been talking colleges and careers and it has really hit home what all this means. I am so proud of him and so excited for his future.

We had Liz, from Twig and Turtle over on Sunday to take pictures. We took a few of Lauren and I, then of the whole family, then just Lauren. Some we took out in the rain, splashing and laughing and having a blast -- actually FEELING the rain <3 She will send us the CD of the images once she is done with editing. I cannot wait! It's been a few years since we had a family portrait and I know Lauren is excited to see the ones of just her, smizing!

I received a message on Lauren's fan page from a fella named Manny. He is the founder of Gamerosity, a non-profit whose mission is to get iPad Minis for childhood cancer patients so that their time spent in hospitals getting chemo and feeling crummy at home in bed will be a little more fun. He asked if it was okay if they did a Facebook campaign for Lauren. We were honored that he thought of her and of course it was okay. In a few short days Team Lola's campaign was a success and Manny messaged me that the iPad was ordered and would arrive soon. How amazing is that? If everyone in the world was a caring as Manny --- but, you know, here is the kicker --- Manny is a childhood cancer survivor!

I do want to leave you with a link to a video, a video that rings all too close to home. "The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to all children fighting all forms of cancer." Here is a link to their website. The documentary is almost an hour so I'd recommend maybe watching it when you have zero distractions. It's amazing and heartbreaking and I want the whole world to see it. Please share the link to the film on YouTube with your family and friends. We need to be the voice of our children.

I have so much more on my mind right now but can't seem to organize it. It's late. I will post another blog this week after I compose all of my thoughts.

Peace & <3
-cherri