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 have noticed over the last two years that time seems to speed up the older you get. Where time used to drag on, a month can seem like only a week. I am sure I am speaking for everyone my age, remember when you couldn't wait to "grow up and move out"? What I wouldn't give to get those years back. I have NO regrets whatsoever, but there are many things I would do differently if given a second chance.
Lauren had her follow-up PET CT on Friday, November 9th. The following Monday we met with Oncologist #2 at the clinic to go over the report. I normally don't mind when they guess and are right, but this time, I didn't want him to be right. The lesion that presented in August, then disappeared in October (thought to be hiding in a shadow of a chest CT w/o contrast) was indeed hiding and it was back with a vengeance. It was no longer 6x8mm but had grown to 15x25mm and had an SUV of 12.6. There are two smaller ones as well, one too small to resolve on the PET CT and the other, which was present in the last scan, increased from 6x8mm to 10mm with a low SUV of 3 (< 3 is normal). This was obviously devastating news for our family. We had such high hopes that the new disease was really gone and not hiding. How condescending can cancer really be? HAHA! Well, the joke is not on us cancer, it's on YOU!
As we took a week to reflect and sit with all the new information, it seemed a lost cause to get Lauren to commit to doing more chemo. This isn't her first walk in the park and unlike childbirth, cancer patients do not soon forget the torment and pain associated with chemotherapy. The month she had off between the two scans brought HOPE of the possibility that the mysterious tumor was in fact gone. We had seen this happen before in May 2011, while she was off of conventional treatment. All lung disease had resolved, without the use of chemotherapy.
Friday afternoon we took my son to pickup his tuxedo rental for a dance he was attending on Saturday. Soon after, Lauren would tweet "Ever think about what it's like to die young? Not getting to go to prom or get married and have kids. #thinkaboutit #donttakelifeforgranted". I could literally feel my heart breaking. I was semi prepared for Lauren to choose quality over quantity. It's one thing to lose a loved one tragically, but to lose them tragically as they die slowly is an unbearable thought. I asked her about it with tear soaked eyes. She replied "Mom, I have decided to do the chemo".
Through out Lauren's journey, I have tried to always make it a point to let her feel as in control as possible. The decisions were always hers to make, but I made sure they were well informed decisions. This new protocol may be it for her. Everything else currently used as standard of care will only buy her time. The rarity of Lauren's cancer is reality. We've exhausted all that the conventional teams have presented. Everything else is palliative care.
Soooo, next Tuesday will be day 1 of Lauren's new protocol. She will get a one hour infusion of Liposomal Doxil (no longer in short supply) every two or three weeks. She will also be taking a daily oral dose of Etoposide with a one week break every two or three weeks. This combination is not standard of care, and in a way, Lauren is running her own mini clinical trial where she is the only patient. She is giving it her all this time, including herbal supplements to synergize with the conventional protocol along with alleviating most if not all of the side effects (including, but not limited, cardiac protection against the Doxil). Once we get rid of those nasty tumors hanging out in her lungs, she'll start a high dose immunotherapy that will last 2-3 years. If at any point during the immunotherapy she relapses, all bets are off.
I wish each and everyone a wonderful Thanksgiving holiday with your friends and family. Don't forget to tell the people you love how much you care. I leave you with a few pics of Lauren taken recently.
The first pic is of Lauren standing up outside of the sunroof while Jim was driving around the neighborhood. The biggest smile I have ever seen =)
The second pic she is wearing her new wig (which I LOVE because of its red tones). It looks like it could be her natural color.
Above is a skin for the iPhone that I designed. If you are interested in getting one for yourself, I can send you the image file and show you where to order it from. No, I am not trying to make any money, just trying to promote awareness.
peace and <3
-cherri
I would also like to ask for prayers and positive energy sent over to Oakland, CA to Ariel Gariano, her mom Crystal and the entire Gariano family. Ariel has been battling the rhabdomyosarcoma beast for five years now and has relapsed once again with new disease. You can find updates on her Facebook page or Caringbridge. Much love to this family <3 as my heart breaks for what is to come.
Where to begin? The last week has been a little crazy to say the least. Lauren was set to start her new protocol last Thursday. We talked it over with her team (side effects, etc.), signed consents (yes, she signs it as well) and hung the chemo up for infusion when oncologist #1 asks to see me in her office. After comparing the PET CT done in August to the chest CT she had last week, it appeared as though the tumor present in August had resolved itself and that they did indeed see an increase in a previous noted nodule (that didn't "light up" in the PET) in addition to a new nodule noted 4mm. Since we only did a chest CT with NO contrast, it was not definitive that this was active disease or not. As we sat there staring at each other, it was apparent that she too was at a crossroads as to whether we should proceed with treatment or not. I quickly made the decision to hold off and Lauren's nurse ran back to stop the infusion, I kid you not, which was about six inches away from going into Lauren's body.
The plan was to consult with the radiologist at Children's Oakland as soon as possible, looking at the actual films side by side instead of relying on a report. I got a call from oncologist #1 late Friday night. The nodule from August was indeed gone and the "old" nodule had grown from 4x6mm to 6x8mm and a new nodule, approximately 4mm had appeared. The increase in size of one (even though it hadn't lit up in the PET CT), the appearance of a new one and the fact that they did appear "nodular" in appearance, made them believe that this was in fact new disease. There is NO way to actually know for sure without a PET CT.
Taking in all of this information is really hard to do. Decisions concerning Lauren's care have never been easy. Putting poison in your child, knowing the long term side effects she will suffer from, is not ideal and that is why I advocate so hard for better less toxic treatments not to mention making huge life changing healthy nutritional choices.
So that brings me to a phone call I received today from oncologist #2. After he reviewed the film, again, with the radiologist at CHO, they decided that it is possible that the nodule we believed to have resolved itself may be hiding. Seriously? Thinking that Lauren was taking a deeper breath in one scan vs. the other, the nodule could have temporarily disappeared into tissue, appearing as though it was gone. All the "may have" & "could be" shit is killing me. I just want to scream! At this point, we discussed proceeding with treatment or waiting and well, I choose to wait. WE choose to WAIT and SEE.
What they (conventional oncologists) don't know is how Lauren is still alive. She is not a statistics and has defied all odds up until now. They didn't even think she would survive the initial clinical trial she was on from December 2009 to June 2010. In October 2010, when we decided to stop chemo and move forward with complimentary/alternative treatment, Lauren still had quite a bit of active disease left in her lungs. In eight short months the disease was gone. Who's to say that she can't do that again. I will never forget the look on the oncologist fellow's face when he came in with the results. It was above him to even think that what we had been doing for eight months could have caused such resolve. In fact, I had another oncologist come in and sit with us, asking what we had been doing and if we would like to speak to a group of oncologists at the hospital to try a not so conventional collaboration. And still, to this day, oncologist #2 continues to believe that the nodule couldn't have just "disappeared" because she "wasn't on any chemo since May".
For now, I have requested a PET CT to be done sometime in November. Nothing will change here at home. We will continue to eat healthy sustainable nutritional food and Lauren will continue with her morning smoothies and 80+ herbal supplements a day. I know its somewhat unconventional to not rush Lauren to poison, but what if? What if what we are doing her at home is helping her disease resolve itself? I know its hard to believe, but try, just for a moment...
On a lighter note, our awesome friends at Stupid Cancer posted a photo of Lauren on their Facebook page on Saturday asking if we could get 1,000 likes for being "one of the most amazing people out there". Today, just now, her photo has over 250,000 likes, 1,500+ comments and shared over 3,000 times! How amazing is that? If you have a chance, please like Stupid Cancer's page. Check out their website. They are the voice of the young people and they do a GREAT job! Love them!
Here's to clean scans in November! peace and <3 -cherri
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!
I've sat staring at this screen for quite some time trying to muster up the courage to write this blog post. If I just keep it all inside and not make it public, will it go away?
It's been a little over two weeks since we found out that Lauren has relapsed for the third time. Devastated is an understatement. It seems with each course of treatment the "stable time" gets shorter, which scares me more than ever. Her cancer is becoming more resistant than ever and now is the time to NOT lose HOPE.
Thanks to Leslie over at NNCCF, I made contact with Dr. Douglas Hawkins at Seattle Children's hospital to get his opinion on treatment options. Dr. Hawkins is the Associate Division Chief for Hematology/Oncology at the hospital, Professor of Pediatrics at UW School of Medicine, Associate Director of the Center for Clinical and Translational Research and most importantly, a sarcoma expert. He also is the chair of the COG (Children's Oncology Group) Soft Tissue Sarcoma Committee. I asked CHO to send over all pertinent information on Lauren's case to him and I made the phone calls/did the running around to get all imaging (CDs) sent to him as well. I spoke briefly with him last Monday and we did discuss his suggestion on treatment. He hadn't yet had a chance to speak to the Oncs at CHO, so if anything changed after a consult with them, he would get back in contact with me.
We met with Lauren's Oncologist from CHO the following Thursday (a week ago today) to discuss Dr. Hawkins suggestion and to go over a couple of other ones that he had researched and thought we might be interested in. I won't go into major details about the meeting aside from saying that I walked away more pissed off than I have ever been before. Twice during the conversation he said "we are not working towards a cure". ARE YOU SERIOUS? First of all, this is not something you say IN FRONT of the patient and second, you may have lost all hope but we HAVE NOT! I was hoping that Lauren didn't pick up on his statement, but being the sharp girl she is, she did. I have honestly lost a lot of respect for this team as of late and I am between a rock and a hard place right now.
So, below are the options that the medical oncologists have suggested, in order of their importance.
1) Vincristine/Irinotecan/Temozolamine
-- Vincristine is KNOWN to cause severe neuropathy. I'm not sure Lauren would recover from another drug that causes neuropathy.
2) Vinorelbine/Cytoxan
-- Again, Vinorelbine is KNOWN to cause neurotoxicity/neuropathy.
3) Pazopanib (Votrient)
-- Many of our adult sarcoma friends have been on this since it's FDA approval in April. This is the protocol drug that Dr. Hawkins suggested.
The more I researched these drugs and the more I talked with our Naturopath, the more I realized these protocols are primarily a form of palliative care. They aren't known, at least on paper, for curing, but more like stabilizing and, for lack of a better phrase, buying time. I was trying hard to sit with this and be ok, but really, who the hell would be? Then I got an email from our ND and again, my HOPE was ignited. He and a medical oncologist colleague of his have come up with a #4 option and while it is still chemotherapy, they believe THIS protocol has a very good chance of curing Lauren. My HOPE has been restored!
4) RFA (Radio Frequency Ablation) followed by Doxil/Etoposide followed by intense immunotherapy
The RFA would blast the tiny tumor located in the pleura but theoretically leave microscopic disease floating around, which is the reason we follow up the procedure with chemotherapy to kill any remaining disease. Lauren has had Doxorubicin (and Etoposide) in the past and Doxil is in the same family so she will be getting a smaller dosage to make sure her heart is protected, as the Anthracycline family of drugs is known to cause heart problems. Our ND will prescribe a drug called Trental as a prophylactic that will also help with mucositis that the Doxil will most likely cause as well.
The problem we will most likely run into is presenting this "out of the standard of care box" protocol to the team here, as they would be the ones to request authorization and they will be the ones to administer the chemotherapy and find a suitable facility to do the RFA. The two teams have thus far cooperated and meshed quite well with each other and I am hoping they continue to do so, for Lauren's benefit. I do not want to change Lauren's provider, but I will if I cannot get them to approve and agree that this is her BEST chance of surviving this terrible monster. Our ND will be communicating with the oncology team in the next few days and if need be, I will also be discussing our decision with them to make sure they know this is what we want to do.
For the last week Lauren and I have had many discussions on life, treatment options, her journey. I've cried. She's cried. We are all very scared of the uncertainty of the future. We have always maintained that the decision to treat or not treat her cancer was hers and only hers. What a HUGE burden to bear for a 15 year old girl. Last week, I told her, if she wants me to make the decision, I would. But my brave girl said "No Mom, I can do this. I just need to think." As this is the 4th line of treatment, Lauren is no stranger to the side effects of the chemotherapy. She knows what she is in for. She knows how it makes her feel and its not like time has healed her wounds. It is all very fresh in her memories. But she still has fight left in her and with my renewed HOPE, I encouraged her to continue to fight. The ND also said that he will be the first to tell us when its time for Lauren to "wave the white flag" and surrender her body to God but he does not believe that time is now. With every fiber of my being, I told Lauren to fight like hell! This is a battle and I know its hard and I know it makes you feel like crap when in treatment, but giving up is not an option right now. NO ONE is going to ever take our HOPE away from us ever again.
With renewed HOPE and STRENGTH!
peace and <3
-cherri
We lost an unbelievable friend yesterday to Ewings Sarcoma. Karen, thank you for being such a great friend and true inspiration to both Lauren and I. No more drugs, no more cancer. You are finally free. Fly with the angels sweet girl.
I am sure most of you have heard Miley Cyrus' song The Climb (it's older, so I am guessing most have =)). When I hear this song, all I can think about is Lauren and her journey the last two and a half years. In the cancerverse, unless you have been stable (with NED) for five or more years, you are not considered "in remission". It almost feels unattainable to reach this milestone. Five years in the cancerverse is a LONG time. Lauren has been on three different protocols (six different chemotherapy drugs (they are always given in pairs)) with the last causing so much damage (peripheral neuropathy - also commonly called foot drop) she could not walk unassisted for months not to mention chemo brain and I am sure there will be other complications in years to come. She endured 36 radiation treatments to her pelvis causing severe burns, premature menopause and stopping the growth of her uterus making it impossible to physically bear children of her own as well as other female complications that she would be mortified that I share with everyone. She missed a year and a half of middle school and a semester of high school. She lost many friends who were unable to relate to someone who has cancer (some sooner, some later), many stares (I've taken to staring back and making faces when people do this now) and sad sympathetic gestures when she goes out in public, sans hair.
Needless to say, her journey has not been easy and the climb has been the most difficult to date. Her rehabilitation could take months, if not years. I am sure that she dreams of the day when she can run again and be able to play soccer or even simply walk without a walker or a cane. I know I do. I am sure she dreams of having a normal teenage relationship with a boy. I know I do. If you ask her, she will tell you that she is not sorry that she got cancer. She will tell you that it has changed her life, but mostly for the better. And that goes for our whole family. We cherish each moment, living for the day and not for the future, for we were never promised tomorrow. We are thankful for each day we have here and we try to make the best of it, no matter what.
The following pictures are from a short hike that Lauren and I took a couple of weeks ago. It's a small hill behind the apartments that we lived when we first moved to Reno where her and Tyler would go on frequent walks, before her relapse; before the chemo damaged her ability to walk. The first incline up she used her walker, but being a dirt path made it harder so she ditched the walker and held my arm the rest of the way. I was so proud of her for not quitting (a word that is NOT in her vocabulary). She is my inspiration, as I am sure she is to many of you.
We participated (more like visited) the Douglas, NV ACS Relay For Life last weekend with our friends The Reyes family (who lost their son Cris a few months ago). Lauren and I walked the survivor walk in memory of Oliver, Neto, Cris and Clayton -- our dear friends who we lost over the last year and in honor of Lauren and our friend Ariel who are still fighting hard for the right to live. Lauren was honored at the survivor dinner as being the youngest one at the event and received a gift basket. At the beginning of the survivor walk they asked people to raise their hands when asked "are you a 5 year survivor, 10 year, and so on". There was a woman there who is a 47 year survivor! Amazing. Lauren teared up once we sat down and when I asked her what was wrong, she said, "I am only a two month survivor". I could see the fear and uncertainty in her eyes and I just hugged and said, "Don't worry baby, you will get there!". Some may say that I am preaching false hope, but regardless, I don't ever want her to think that there is NO chance because then, you start to lose that fight and once you lose that fight in you, there is nothing left holding on to keep you alive.
Recently we were asked to be one of four families participating in a promotional video for NNCCF. The concept is similar to the videos now viral on sites like YouTube where there is no talking, but only words written on cards. The video will be simply prolific and I am sure you will all love it! We had an awesome time and I will be sure to post a link once it is complete. Here is a still shot from one of the cards (we wrote what was written on all the cards).
Lauren has her follow up PET CT scheduled for tomorrow. Originally I was told that BC/BS denied the scan because they said it was too soon after the last one (two months). As I mentioned in my last blog post, I've been "stewing" the last few weeks, worried that the disease is no longer stable. I've been so scared lately. I just want this to be OVER! Anyhow, once we receive the results and take time to regroup on the results, regardless of good or bad, I'll post about her next treatment plan in depth. There will be no more chemo.
I've asked a few times about prayers for Ariel, an almost 14 year old from the bay area battling 3rd relapse rhabdomyosarcoma. I asked again last week, through Facebook and Twitter, as Ariel had a really tough week and was in desperate need of some urgent prayers and positive energy. I am still asking for you to add Ariel and her entire family to your prayers each day. She needs to be home and well for her 14th birthday with her twin sister this weekend. Let's get this done!
One last thing, September is childhood cancer awareness month and I intend to advocate like a crazy momcologist! It's time to make people aware that kids get cancer too and the lack of funding is sickening.
It was really tough for me the first time around to settle in to Lauren's life sans conventional therapy. I knew what we had decided was a huge step and that we were doing everything in our power to treat Lauren's cancer naturally, the way God intended. Yet, somewhere in the back of my mind I kept thinking "Are we letting the cancer grow?". I kept second guessing the decisions we had made as a family and naturally it scared the sh*t out of me. I've kinda been feeling the same as of late. I tend to call it my "dark side". While most of the time when you see me, I will have a smile on my face and never let on that anything is bothering me, but know that inside I am aching and angry and constantly doubting my decisions where her treatment is concerned. Yes, I know that half of winning this battle is to believe. But, BELIEVE ME, others have believed and still did not win. What makes my baby so special? And without any of you taking this the wrong way, "God has a plan" and "Things happen for a reason" are not what a momcologist wants to hear. And last but certainly not least, Lauren still hasn't gotten to the two year mark, much less the five year. In this cancerverse you see, NO ONE speaks of the two words/phrases every survivor wants to hear until those milestones -- No Evidence Of Disease and Remission. All we get at this point is stable. Stable means that there is NO progression. Yes, that is good news but really, in the eyes of a 15 year old that knows she very well may not make it to 20, its not the words she wants to hear and frankly neither do I. I know we are dealing with the monster of all monsters. Lauren doesn't have breast cancer or leukemia. We were told in the beginning that a cure is most likely not possible. But I refuse to think that is true. I want so much more for her. I want her to have a career, a marriage and family. I want her to experience life on her own, without her parents watching her every move like hawks. The letting go is the hard part and I honestly thought I would be doing this in a much different scenario. But alas, my "letting go" is much different that someone who has a 15 year daughter who DOES NOT have cancer. What hurts the most is that during this struggle, we moved her 200 miles away from the only friends she has ever known. If it wasn't for her relapse, she would have made new friends, but damn this disease had to go and ruin that too.
Last week Lauren had a breakdown and told me that she has not been happy in a month or so (most likely right around the week she spent in California visiting her two best friends -- or rather once she got back here). She took a page from Mom's favorite book and has been hiding it and just smiling that huge smile to make me believe everything is okay. Go figure. I taught her well. My heart continually breaks into pieces and I really do not know how to put them back together again anymore. Hence, "the dark side". I wish I could fix everything but I have to start by fixing myself first. How do I make myself happy and content with this life when I know how unhappy my daughter is? How scared and afraid she is and not wanting to bring it up with me for fear of hurting my happiness. Geez. She's hiding her pain from me and I am hiding my pain from her, constantly sacrificing our own well being for the sake of the other.
It seems we are both stuck in this dark place and I myself do not know the way out so how in the world am I supposed to take her hand and lead her out?
The first six months of Lauren's treatment were followed by
occasional CT scans and MRIs, so you can imagine my dismay when week
before last she went in to get an MRI of her spine and she had not one
but three panic attacks when she was being slid into the machine. Now,
take into consideration that this time she had a cage strapped over her
face/head to keep her head and neck from moving and was also going in
head first instead of feet first, as she has done in the past. We
decided that it was probably best to do IV sedation (Twilight sleep is
what they call it. You are "awake" but pretty much don't care.). I
reschedule for the following Wednesday and off we went. Unfortunately,
as some children/adolescents do, she burned through the meds too quickly
and each time she would close her eyes I would gently let go of her
hand and she would automatically open her eyes and start to cry.
According to the nurse, she had already given her three times the amount
of what she would normally give someone Lauren's size. After four
tries, we disconnected and decided general anesthesia it would have to
be. Luckily they worked us in to Friday and after three crying fits of
"Mom, I really can do it! Put me back in!" we left the hospital. Friday
the 13th I took her in for a noon appointment an hour early to get ready
for the anesthesia and was told they were running about two hours
behind. Sigh. Like I am not used to that. She was finally taken into the
room around 1:30 and I sat alone in the waiting room for three VERY
long hours. The difference in having all of her previous surgeries at a
children's hospital is that as soon as they come out to recovery, the
parents are allowed in. This is not true at a normal hospital. I had to
wait until they extubated
her and she woke up before they would let me in to see her. Frustrating
to say the least. Anyhow, we were there for eight hours and let me tell
you, when Lauren is NPO (nothing by mouth), I am NPO. Needless to say
we stopped for food on the way home. And I saved the good news for last
... there is NED (No Evidence of Disease) in her spine. It was all
clear. So no real reason, yet, as to the tingling, but assuming it is
nerve related as of now. YAY!!!!!
Lauren in PACU - wish I would have got a video as she was telling people she loved them
We spent Saturday at a private fishing reserve in
Markleeville, CA with other cancer survivors (both young and old)
compliments of Reel Kids, Real Fishing and NNCCF.
Lauren was set up with a buddy and taught how to fly fish from the
shore of a stocked stream. After lunch, we took a ride out into the
meadow, up stream a bit, and the kids waded in the water cooling off
after a warm day. The beauty of being out in nature, not a care in the
world, was exactly what we needed. The time spent with family is so
precious and I cherish it with all my heart. I wish every day could be
like that.
Being pulled on a "make-shift" trailer out to the reserve
Lauren was supposed to have a PET CT next week to find out if she
is still stable. Unfortunately the clinic called on Tuesday to let me
know that Anthem BCBS is denying the study based on the fact that it is
too soon since she had one only two months ago. She will have to wait
until the end of August for the next scan. Now, I am trying really hard
not to worry, but those of you in cancerverse know that it is important
to find out if early if there is active disease. This is the kind of
crap I hate about insurance companies, but if I consider appeal, it
probably won't even be resolved until the end of August. So I am just
going to try and relax and get to the end of August so I can breath
easier.
Unlike the week that I turned 30 (I think I was drunk the whole
week. Talk about not being able to come to terms with my twenties
gone...), this week has been pretty low key. I guess the fact that I
don't drink anymore makes it a little easier =) Ten years come and gone.
WOW. Next month is my 10 year anniversary. I would be lying if I said I
didn't feel 40 at times. But my kids keep me feeling young and
honestly, my cup is more full than it has ever been.
I will leave y'all with a quote from Lauren on one of our sarcoma
boards to all the survivors out there. She really is wise beyond her
years.
"So today someone commented on a picture of mine asking if I
still had cancer/going through treatment and I said yes, I will always
have cancer. She said "aww, I'm sorry". I told her don't be sorry.
Having cancer changed my point of view on life and I feel I am happier
now than I have ever been, even with the stuff that I may not be able to
do. I just want all of you to know that having cancer should not ever
slow you down or keep you from enjoying every second of what you have."
As I sit here writing this, Lauren and her friend Lexi are down at the swimming pool enjoying the sun and having a grand ole time =) These are the days I am thankful for! <3 She has been feeling really good, getting some really good exercise and PT time in and hopefully will be ready to start back to school in September. (fingers crossed)
Next steps for her will be:
1) MRI tomorrow. There will be three 45 minute scans on her spine to check for metastasis. Last week, at her chiropractic appointment, she mentioned that when she bends her head up she gets tingling in her toes. Now, this isn't every time, but it is something to be alarmed about as it could be indicative of something pushing against her spine. God forbid she has new tumors there as that IS NOT the path we envision. Please pray we get good news and this is nerve/neuro related (geez, never thought I'd be wishing for one bad thing over another).
2) Follow up PET CT. This will be scheduled towards the end of this month. If there is no new growth (and of course, the MRI results are good), then she will begin a new protocol based on some suggestions from her ND. "Stable" to us would mean that she is once again in remission (the Oncs say "stable" because there is something showing up on the scan where the lung nodules were, but they are not "lighting up" so we "assume" they are dead (can you see me putting up the quote fingers when I write this? LOL).
Her physical therapy has been going really well and we are in the market for a new device that will stimulate her nerves via the calf and help her to pick her feet up when she is walking. People reading this from the cancerverse will be nodding their heads when I mention that Lauren has a severe case of the slap foot. It's a huge side effect of chemo and the peripheral neuropathy. We are still waiting to see what, if any, insurance will cover.
The video below is of her testing out the device. Pretty cool =)
Three drugs we are considering for next protocol are Noscapine, Tetrathiomolybdate (TM) and Parzopanib. Noscapine works via microtubule inhibition, similar to Taxotere, without the side effects. Tetrathiomolybdate selectively chelates copper to reduce ceruloplasmin and inhibit cancer related angiogenesis. It will work best once she fully returns to a state where there is no evidence of disease. Finally, Parzopanib in a non-cytotoxic targeted agent that was recently approved by the FDA for use in metastatic, treatment resistant sarcoma.
I will try to post on Friday if we get results from the MRI that soon. Please keep us in your prayers. I have asked before that you all also pray for Ariel and for Clayton. Ariel's journey has become beyond complicated and she and her family are in need of some prayer and positive energy. Clayton's family is spending each moment loving and kissing on him, knowing that a miracle needs to happen soon.
Also, I would like to offer my deepest sympathy to the White family. I mentioned Cynthia in my last post. Cynthia earned her angel wings last week and I know her family is hurting and still have many questions as to why and how this could happen. I have no words of comfort except to just know that cancer did not win. Cynthia did. She is now cancer free, running and playing in the fields of Heaven for eternity, waiting until one day when she is reunited with her family.
I hope all of you are having a wonderful holiday spent with family and friends making amazing memories. Love you all!
As some of you may know, I am not a huge American Cancer Society fan/promoter. I do think that every type of cancer deserves more funding and research, but I also think that <3% of funding towards pediatric cancer is a travesty. That is a stat that has been reported on for quite some time in my peds cancer "circle". It's disappointing to say the least. Now, with that being said, participating in ACS's Relay For Life event can be extremely profound. The sense of community feels unreal and overwhelming at times. The love you feel for everyone there is exciting and heart-wrenching. The sorrow you feel for those who are angels now is sad and surreal. That is why I continue to support the event and I continue to be humbled by the support and camaraderie of our Team LOLA! They continually amaze me. Their dedication is AWESOME! Needless to say we had a wonderful weekend despite the rising temps, reaching over 100 degrees on Saturday. The Luminaria ceremony is sad and I grieve for those we have lost over the last year. But I rejoice in the cause because regardless of how much money we raise, the event to me represents a place where I don't feel so lonely in this fight. Where people adore Lauren and don't stare and whisper. Where she can be herself, sans head wear, and not feel self-conscious. Just when I think humanity has failed her, God shows me that there are still good people in the world. And for that, I am truly thankful <3
Below are two video links for Brentwood's RFL last weekend. One is Team Lola's and one is from the RFL "Living Room" where I begged Lauren to go in for an interview, but her shyness won and she didn't get over in time to make it into the video. Regardless, it shows you what kind of people we get to hang out with and they are so very cool.
I would also like to ask for prayers for two children that are near and close to our hearts. Clayton, who is battling relapsed Neuroblastoma, has been put on hospice. His disease is growing at a super rapid rate and they have run out of doable options. Please life him and his family up in your prayers tonight. Cynthia, who we have not had the pleasure of meeting personally, but have enjoyed the online friendship of her mother Nancy. Cynthia has Epithelioid Sarcoma and has already endured foot amputation and is only 11 years old. New disease was found a couple of months ago and right now, they are exploring options at St. Jude. She has had some serious swelling in both legs and have called in hospice for home care in treating the swelling and pain. Please include them in your prayers tonight as well. You would not believe how bitter this disease has made me and I hope and pray every day that new treatment options become available very soon for our children. They deserve to be living a normal life. They DON'T deserve to be sick like this, ever.
It seems that we are at a fork in the road concerning decisions on Lauren's next treatment plan. After discussing the preliminary scan with her Oncologist this past Tuesday, there are still some looming questions. Long story short, we do not know for sure whether the spots in her lungs (which coincidentally have NO metabolic activity) are either cancer or scar tissue. Without a biopsy, we will really never know. In addition, the primary tumor, which showed NO metabolic activity back in November, is now lighting up again. *BIG SIGH* We have not discussed additional conventional/traditional treatment protocols (assuming the Oncologists would want her to stay on the current/last protocol) but do have a couple of options we have courted from the Naturopath. I am not 100% prepared to discuss these options until late next week when I will Skype with her ND. Until then, I will let y'all sit with this latest news. Uncertainty really does suck. If we knew more information about the lung scans, then it would be a lot easier to decide whether we go left or right. But that isn't going to happen and we are going to just take a few weeks to consider all her options.
On Sunday we joined NNCCF at Wild Island Adventures in Sparks for some mini-golf and go-cart fun. It is always nice to see our fellow cancerverse families (some of whom we never get to see because treatment days are different for everyone). We met up with our favorite nurse, Courtney, whom we will not be seeing anymore in clinic as she has decided to not go back and forth from hospital to clinic and will be focusing herself full-time at the hospital from now on. I am so glad that we have developed a friendship outside of treatment because she really is a GREAT person and Lauren and I would both miss her very much if we didn't see her anymore. We had a blast playing golf and Lauren was driven around in the go-carts by her surrogate mother, Leslie, from NNCCF. My heart broke when I saw Sandra, another mom who I got to know from days at the hospital when Lauren was receiving her chemo there. Sandra lost her son Cristian recently (Lauren and Cris had the same treatment days before we moved to the new clinic). I had to go outside for a quick meltdown as it was really the first time I acknowledged his death and was just so over-whelmed with grief. I hope to stay close to Sandra in the future. She really is a GREAT person and an awesome MOM =)
That's all the time I have folks. This weekend is our annual Relay For Life event back in Cali and I have been crafting bracelets and making signs with Lauren. We walk for childhood cancer. Someday, there will be better treatment options and less long term effects and I want it to be because we made a difference. If you would like to donate to ACS and Team Lola, please click the link above =)
Lauren has been doing exceptionally well. Days (or weeks) like this make you forget she is fighting for her life. It's very deceptive at times. Even before we found out she had relapsed, things were fine. So you can only imagine how we are feeling right now with her PET CT scheduled for noon tomorrow. I hope and I believe and I do have FAITH, but that little voice in the back of my mind stays on the ready, preparing for what may come. Now is the time to send up those prayers, send some positive energy, whatever you do to help get yourself through the day ... please add Lauren to your "list".
My mother-in-law visited over the weekend from Oregon. On Sunday we drove out to Animal Ark, a local animal sanctuary that our Orthotist told us about. It was a beautiful day, perfect for our mini safari. Lauren had a fabulous time and we even let her drive the golf cart, albeit I was holding on for dear life, for a bit.
Monday I drove her down to Carson City to a horse ranch to go horseback riding. Erin, the owner, was amazing and really peaked Lauren's interest in 4H. I've been trying to get Lauren interested in some outside interests so I am excited she had such a great time =)
Physical therapy is going great and Lauren finally got her orthotics last week. With jeans over them, using her walker, it's amazing how much her gate has changed. We are changing up her schedule to now go twice a week. We've talked a lot about having patience and knowing that this isn't going to happen overnight. Unfortunately retraining her on how to walk and strengthening her muscles to do what they are supposed to do will take time. But it will be worth it as I know she will someday be able to run and play soccer again.
Well, I am off to bug Tyler about packing. He is flying out tomorrow morning to meet up with his Grandma Bev in Oregon, then driving down to Lake Shasta on Friday for a four day vacation on the houseboat. I am already setting up reminders on my cell to remind him to put on sunscreen! I may be a nag, but he will thank me when he's older =)
I will probably post a short update tomorrow evening, as I have been promised a call with preliminary results of Lauren's scan. Being in Reno delays final report because they (the oncs) like to have the image disc sent to CHO to have their Radiologist read it before communicating the final. Sigh. Regardless, we will know something by tomorrow night. Hoping for the best possible results. NO EVIDENCE OF DISEASE!
Tuesday was Lauren's 15th birthday! After a week from hell, having friends up for the holiday weekend and ending it with an amazing birthday really made it all better. Her counts have recovered and she is well on her way back to normalcy (whatever that means =)). She's been asking for a keyboard for a few months now, so we got her one and she has been on it non-stop. In fact, using YouTube and her keen sense of hearing, she has learned to play a Miley Cyrus song already. Music really is the best therapy!
We picked up her AFOs yesterday and honestly, they couldn't have come sooner. Her neuropathy continues to plague her and has gotten worse over the last few weeks making it impossible to walk without assistance. Up until now, there has never been any pain, just tingling and numbness. I've prolonged the need for Neurontin only because it is a maintenance drug. She would need to take it everyday. In the last week, she has started having pain in her right big toe. I'll be adding this drug if the pain persists.
Her next PET scan is scheduled for June 7th. I am going to push for a sooner reading, but have been told that I may not be able to see a doctor to discuss until June 25, which my fellow momcologists will agree this is unacceptable. Welcome to seeing traveling oncologists and not doctors who actually live here. I am sure I can get a same day reading from the radiologist here in Reno, but the oncs like to have the imaging read by one of the radiologists at CHO and then deliver the news in person. I've fought over this numerous times and short of traveling to Oakland for imaging, this is how it goes. Even if we did travel to get the scan, it's still at a private facility as CHO does not have PET equipment.
This weekend will be more celebrating as my mother-in-law is coming in from Oregon and we have a few special things planned, including visiting a wild animal sanctuary on Sunday and horseback riding on Monday. It's supposed to be nice and warm and I cannot wait to get some much needed natural vitamin D =)
I leave you with video of us singing Happy Birthday to Lauren (and her singing to herself). Isn't her smile contagious?
Lauren and I both noticed late Saturday night that our senior cat, Max, was coughing. My cats puke, it seems, on a daily basis so I didn't give it a second thought until I noticed on Sunday that he was missing. I found him sleeping under my bed. By sight alone you could tell something was wrong. He was listless, wouldn't eat or drink, and could barely walk. It was bad. He passed away on Monday evening. He is the first pet we've lost as a family. A mistake w paperwork at the vet has left us without Max's ashes. I have respect for the vet as she was genuinely mortified at this unimaginable mistake and I am sure the call was the hardest she's ever had to make. Unfortunately she wasn't here consoling a grieving 14 yo who felt it was like losing him all over again. What's done is done and there is nothing we can do to change it. I love that girl so much and I just want her to be happy and confident in her future. It's times like this that death is so real for her. The finality of it is sometimes unbearable to imagine. We are going to make a memorial with a cross, some pictures and his bell collar. She needs some closure and I think this will help. No one ever thinks when adopting a pet that someday they will die. It really does suck.
Lauren had been having minor nose bleeds since Friday with an increase in frequency by Sunday. Standard protocol would be to go to the ER if platelets are low. I tried some different things here like cold compresses and aquaphor but nothing was helping. After discovering Max and realizing the severity, tears started to flow which made the nose bleeds heavier and almost uncontrollable. This was the first time ever that she had one that I or she could not control or stop so I knew a trip to the hospital was inevitable and I knew it couldn't wait til Monday. So off we went and lucky we did. After running a CBC we found out her platelets had dropped to 7 and her WBC was 1. All bad. We chose for an admit because it would be a couple of hours before the blood bank would get the platelets and being in the ER was not comfy. The first bag of platelets were hung, at 5:30am. Really not ok that it took so long but honestly its not worth going into. After one gentle and one not so gentle reminder, it was done. She was promptly discharged at 10:30am and we went straight to her appointment to be fitted for AFOs (ankle foot orthotics). After being up for 24 hours, we came home to a very sick cat and well, you already know what happened from there.
For the most part, I try to be supportive, cheerful and uplifting because the alternative isn't really me. But sometimes I just wanna crawl in a hole and cry because sometimes, life really does suck.
Rest in Paradise Max. Wait for us on the Rainbow Bridge (thanks Jen <3)
I barely remember our lives before Lauren's diagnosis. Regardless of how we chose to live our lives then, this life (our own personal "cancerverse") will never be the same. IF Lauren beats this monster once and for all, she will still live (WE will still live) with the long term effects for the rest of our days here on Earth. For this, I am sad.
I really thought that we were living life in a sort of carpe diem kind of way ... boy was I mistaken. Once you have been faced with the reality of mortality, your way of thinking, of living, changes dramatically (to say the least). Things that seemed all too important are but a thing of the past. We live each day as though there will be no tomorrow. Why though did it take Lauren getting cancer to make us realize that it really IS the little things?
Lauren had a rough couple of weeks following her last dose of Taxotere/Gemzar. She was neutropenic for almost a week with her white blood cell count dropping to zero. The mucositis, as she described it, was a very close second to the same mucositis she experienced with the Doxorubicin. The levels of toxicity seem to be greater with each round. She is still suffering from intense sensitivity in her fingertips and hands not to mention the neuropathy in her feet and lower legs has progressed to a point where it is almost impossible for her to walk five feet without some sort of assistance. And just to clarify, it is NOT the cancer that is causing these issues, it is the chemo drugs. Sad isn't it? We not only have to bring ourselves to the brink of death to kill the cancer, but have to endure a lifetime of complications not from the cancer, but from the very drugs we used to save our lives. If that isn't irony ...
The new Physical Therapist, Abby, has ordered Lauren a walker so that she isn't constantly bed-ridden and will be able to move around more freely with the help of said walker. She has also suggested that Lauren be fitted with AFO's (ankle-foot orthotics) to help with stability and balance. Hopefully, once Lauren has finished with chemo, the neuropathy causing her "foot-drop" will begin to wear off. I've watched it progressively get worse over the last month or so. This is something that could have been prevented, albeit a treatment plan sans chemotherapy. As though cancer hasn't taken enough away from Lauren already, I'll be damned if I let it take away her ability to walk.
Yesterday was day one of Lauren's last cycle for this protocol. Monday, the day after Mother's Day, will be day eight and the final dose. A PET scan will be ordered for late May, just in time for Lauren's 15th birthday. Yep, 15! I can't believe it either! Let's hope she has the BEST birthday present imaginable. Pray with me, light a candle or whatever you choose to do to bring hope and love to our family. Without you, family & friends, we would be so lonely. I know many have been touched by Lauren and her strength through this journey. She has always had that ability to leave a lasting impression.
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