momcologist
/mom-col-o-gist/: n. Without fail - a seasoned oncology nurse, procedure/medical terminology expert, internet research guru, professional gourmet cook, and a giver of free kisses to a child with cancer.
The last 11 days since my last blog post have been emotionally overwhelming and exhausting. The ups and downs have got me in a fog. Sometimes its easier to retreat than to face the hardships that life throws at us. I retreated as much as I could (I do have a family to take care of), self soothed and feel a little better today. The joys of Christmas shopping have brought me out of a stupor, for now. Every big holiday, unfortunately, also brings about feelings of whether this will be Lauren's last and its extremely consuming. Not to mention that today was supposed to be the end of the world (and the day isn't over yet).
Lauren has been fighting bouts of nausea but never actually vomiting. As many cancer survivors can agree, the nausea is actually worse than the act that follows. She has also had some stomach cramping. Trying to get this all under control has proven to be a not so easy task. The good news is that the mucositis, which we were most afraid of, is pretty much non-existent. This week has been a little harder than usual because she actually received chemo three days in a row plus we drove down to SF the day she received her infusion. Both of us suffer from nervous/anxious stomachs when we are away from home, so that didn't make it any easier at all. She is drinking Eater's Digest tea, from Traditional Medicinals, to help with the nausea and cramping and she loves the taste (peppermint/ginger).
We attended two holiday parties in the last two weeks, one for NNCCF and the other was at the clinic (the day of her chemo). She seems to do better when she is "busy" so while she may have not been feeling the best, being distracted by holiday spirit and little kids made her feel tons better. She also did an interview at the clinic for News 4 - click HERE to watch the video.
Team Lola was contacted a few weeks ago by Gamerosity, a newly founded childhood cancer community. They hold social fundraisers to purchase electronic items such as iPad Minis and Nintendo Gameboys for children with cancer. The founder, Manny, is a childhood cancer survivor and understands what its like to have to be bed-ridden 24/7. To date, they have funded gifts for 14 heroes! Truly amazing! Thank you Manny and Gamerosity for all you do!
I want to close out this post with a dedication to Ariel Rose and the entire Gariano family. Ariel, because of you, many people in this world love deeper, speak sweeter, and most importantly, live each day to its fullest. Your time here on Earth may have been shorter than we all wanted, but in those 14 years, you LIVED and that is what each of us are trying to do each day, guided by the grace of God. While we are sad that you are no longer here with us, we rejoice in knowing that we will meet again someday and you will be waiting for us with open arms.
Ariel Rose - forever 14
My wish for all of you is good health and lots of love for the new year <3
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.
I never thought in a million years that I would be happy to get the phone call that the chemotherapy we had chosen, Doxil, was finally approved through the pharmaceutical company. Janssen had placed Lauren on a "waiting list" over three weeks ago and given the date of October 9th for tentative approval status. We knew going into this that Doxil was in short supply. Why, I will never understand. I tried calling Janssen last week to find out why there was a shortage and why a pediatric patient didn't get priority, but alas, since I am not a doctor or doctor's office, they wouldn't speak to me.
I called the clinic today to check in and see if they had heard anything from the insurance company. I was a little peeved because the nurse said "I'll call and check on it" which, at 11am, she should have already done it. Anyway, a few hours later I got a call from one of Lauren's Oncologists to have a final discussion on his feelings about using this combo (it is outside the "standard of care" box so I completely understand his hesitation) and what side effects we are up against. I assured him that we all understand the leap of faith we are taking and I am still 100% sure that we need to be as aggressive as possible while we can.
Since it has been a little over two months since Lauren's last scan, I asked for another one to create a baseline. I am secretly hoping that the damn mini-tumor is gone. With as little radiation as possible (no contrast either), she will be getting a chest CT tomorrow at 10am. It will be quick and painless and we should have results same day or at the very least, Wednesday. As of now, she is set to start chemo on Thursday. It will be a one hour infusion every two weeks plus the oral chemo, to be taken at home every other day (with the caveat that if she tolerates it, we can increase it and if it's horrible, then we can decrease).
I started Lauren on her alternative protocol last week, boosting her immune system and filling her full of herbal supplements that will synergize well with the chemotherapy and also help to prevent the more common side effects - mucositis & hand/foot syndrome. She also started Trental, which will help protect her heart and also help to reduce the severity of the mucositis (I am hoping that she does not have a serious case because she just had braces put back on and mucositis (mouth sores) and braces won't make a good match). We already make really good nutritional choices, but have to "batten down the hatches" for treatment time. It's essential that she eats healthier than ever during this time.
So, here we go. Fourth line. I'm scared. We need this to work. They (doctors) really have nothing else of interest to suggest so this HAS to work. Please keep Lauren and our family in your thoughts and prayers as she starts the new chemo on Thursday. And to all my friends and family who supported my efforts in September, through Facebook, to raise awareness for Childhood Cancer, thank you so much.
I leave you with a promotional video that our family participated in for NNCCF. If you haven't already seen it (I posted it on FB yesterday), then get your tissues. It is amazing and profound; a story of four families affected by this horrible disease. And please consider sharing it. NNCCF has been a LIFESAVER to say the least for our family and the other CC families in Northern Nevada. We love them like family. <3
I didn't realize until today that it has been over two weeks since I last blogged. Geez am I a slacker or what? Where to begin?
Shortly after my last update we were presented with a #5 to our plethora of treatment options. The latest would be a clinical trial just opening up at Children's Hospital in Oakland for resistant metastatic sarcomas. I was told the Ewings arm was already full and that IF this was something we were interested in we needed to jump on board quickly. Um, ya, force me into making a decision based on FEAR...NOT! While it looked promising, we were still leaning towards the Doxil/Etoposide combo because we still need to be as aggressive as possible. The aforementioned clinical trial would also have to take place weekly in Oakland (an hour infusion, once a week), another reason why we decided to place it second on our list of options.
Last Sunday night (a week ago) I composed an email (the hardest I have ever written) to all of Lauren's team (Medical Oncologists and Naturopath) explaining the reasons why we chose to use the Doxil/Etoposide combo. Luckily prior to MY email, both her Oncologist and ND had a few email exchanges on the subject so I am sure it wasn't that much of a surprise and I am so happy that they are all willing to work together. Integrative medicine at its best I'm telling you!
Unfortunately, there is a nationwide shortage of Doxil right now and the clinic, anticipating this shortage, has been in contact with a company in India who also makes it just in case we aren't able to get it here. And let me tell you, I almost want to get it from India and say EFFFFF YOU! to the pharmaceutical companies here. So we are in limbo right now, waiting to find out if/when we will be able to start her on this new protocol. Measures have been taken to protect Lauren's heart (which, BTW, her echocardiogram was good; nothing concerning showed up =)) and herbal products have been started to prepare her for chemo and to hopefully fend off any serious side effects. Now, we just wait ....
In the mean time, Lauren and I made plans to attend the west coast meeting of "Evidence Based Complimentary and Alternative Cancer Therapies Conference" presented by Annie Appleseed Project (we met the Founder of AAP at Stupid Cancer OMG2012) in San Francisco. I can't even tell you how excited both of us have been. The first day was amazingly profound. Unfortunately, Lauren and I became sick halfway through the first day and ended up packing up and driving home early Saturday morning (the longest drive of my life) with fever and congestion. We are still nursing ourselves back to health and are feeling better with each day. I was really looking forward to the second day of the conference and hope that they have some notes and possibly video of the speakers we missed. I still remain confident that Lauren is so healthy because of the changes we have made to our nutrition and because she is being treated holistically even in the face of chemo treatments and conventional medicine.
Below are a few pics I took on our trip down and at St. Mary's Cathedral where the conference took place.
I just realized too that my last update was in August. If you didn't know, September is NATIONAL Childhood Cancer Awareness Month. Each day on Facebook I have paid tribute to survivors that I have known personally (either through face to face or social media). Some are still with us and some have left this Earth to become our Guardian Angels. If you are one of my friends on Facebook, please share these tributes and encourage your friends to share as well. Advocating is the only way we are going to bring awareness to this horrible disease that keeps killing our children. Below is the FB banner I made to honor Lauren and CCAM. Please feel free to use it and share it.
I leave you with a more personal note than I am used to sharing. A lot of people, not knowing what to say when talking to me about Lauren, will say things like "God has a plan" and "Everything happens for a reason". Let me just say that if God's plan is to make our children suffer, then I may be forced to rethink my religious beliefs. If there is ANY reason why our kids should be put through this and not allowed to live a normal life, then please enlighten me. Please think about the things you say before you say them. I know those are common phrases to say to someone grieving (not only for a lost loved one, but for someone going through a life threatening ordeal). I assure you, I have been grieving since December 3, 2009. If it was your child, would you want to hear either of those phrases above? I know that dealing with cancer takes a lot of courage and just being my friend takes a lot of courage, so be courageous and say the things that AREN'T normal. You WILL NOT offend me and I want to make sure that you know my intent is not to offend anyone, but to educate them gently to the things a Momcologist does NOT want to hear. And yes, you think I am strong but I am only this way because I have no other choice. The smile you see across my face is a facade 90% of the time. It's easier for me to smile than to admit I am hurting. I am not flawless. A hug goes a long way. And really, I mean REALLY ... all you need is LOVE!
