Lauren's first roommate was a 20 year old Leukemia patient. She was about four months into her two year treatment plan. Her mom was a plethora of information and I am not sure I could have made it that first week without her. The girl was a huge help for Lauren too. She showed Lauren her broviac and we talked about what it felt like and how sore she would be the first couple of days. I think she made Lauren feel more at ease in the worst possible situation. Unless you are on the same protocol, chances of seeing a roommate you once had are slim. So when we didn't see her for a few months I thought nothing of it, until Lauren was admitted to the immuno-compromised wing of the oncology floor for IV pain management with a zero ANC. When I first saw her mom, I was actually happy (I was naive back then and didn't think that not seeing someone might mean the worst possible scenario). After we hugged, she pulled me into the kitchen and told me that her daughter had a bad reaction (neuro) to chemo and she was completely immobile, unable to walk, talk, eat. The good news? She was still alive. She may make a full recovery after months and months of rehabilitation. I saw the girl's mom about six months later, when Lauren was getting her broviac taken out and I was hanging in the cafeteria waiting. They were being discharged after over seven months straight in the hospital. I was so happy for them. She was actually walking on her own now and making slow but good progress. I didn't bother asking her about prognosis. It didn't matter. She was alive and going home.
What happened to this girl scared the crap out of me and it has haunted me for the last two years. What if the next protocol we decide to give Lauren does the same thing to her? Exactly how much can one's body take before it finally gives in? Have you ever actually looked at the ingredients for some of these chemotherapy drugs? The suffering they go through while this poison courses through their body. I struggle with the treatment decisions we've made, I've made. Am I being selfish putting Lauren through conventional treatment? Watching your child suffer is the worst possible thing in the world a parent can experience. Your only reason for living is to take care of this child and yet, there is nothing you can do to make them better. Not having control of the situation is unbearably torturous. I have learned over time that I have to let go of what I can't control, but it seems as of late that there is NOTHING in the world under my control.
We got the worst possible news we could get last week. Lauren's tumors are growing, during treatment. Well, one of them is still growing. She also has a new spot that was never reported. So where she stands now is spot #1 and #2 are stable nodules (both in the left lung). Spot #3 has grown a couple of millimeters (located subpleural; right lung) and the SUV has risen and now this new tiny spot that was missed over and over at the base of her right lung. While Lauren's cancer has never appeared to be super aggressive, it is still very smart and continually gives us the finger as it grows stronger and more resistant to what we throw at it. Unfortunately, that is what cancer does.
We met with the conventional team (Onc #1) on Thursday. I had really hoped for more options but as it stands, one was presented. It's a Phase 1 clinical trial at UCSF using Topotecan, Cytoxan (a nitrogen mustard alkylating agent) and Rapamycin (an immunosuppressant drug). While it is a phase 1, all of these agents have been tested separately, so the "1" just means that they are testing these as a new combo. Ironically, when Lauren relapsed the first time in November 2011, low doses of Rapamycin was discussed with her Naturopath. The plan would be to get a few cycles in, repeat imaging to measure response and if there is a response, surgery to remove the remaining nodules, though there is some discussion on whether surgery on both lungs is an option. Theoretically, we'd hope that the remaining small stable nodules would be shrunk by the protocol, only leaving the larger one to remove. The process of removing them is what we are not all on the same page about. The conventional team would love to cut them out, while Lauren's Naturopath thinks that radio frequency or cryo-ablation is a better less invasive option, even though surgically they would be going in thoracoscopically.
The CAM team presented a much different plan. Barring any complications with insurance authorizations (and disagreements from the conventional team), we would take Lauren to Kentucky, where a skilled Interventional Radiologist would ablated the lesions using radio frequency or cryo, while at the same time, injecting the lesions with either BCG (a tuberculosis vaccine) or Iscador. The purpose of the injections would be to further push a response from Lauren's natural immune system. The RFA or CA would push that type of response, where surgery would not. Then add the injection and BAM! her own body's natural defenses should kick in. If we got clear margins, she would be started immediately on the TM (lowers copper) and most likely Iscador sub-q injections. We would need her to stay at a NED status for at least six months (before that sigh of relief comes), but ideally for two years. If at any point during those two years she relapses, then all bets are off and we are back at square one. The good news is that the doctor in Kentucky has had really good results with previous patients; some out as far as 10 years with NED. It's a really promising idea, but I am so damn afraid that insurance will nix this one quickly and from what I understand, the treatment out of pocket is around $15k. How the hell do you put a price on the health of your child? I'd sell everything I owned if it meant it would cure Lauren's cancer. I know every other parent would say the same thing. If insurance rejects this plan, we could still do the ablation procedure using a local doctor (or someone from the Bay area) without the injections (although they are really key in this treatment plan).
So, here we are again. This will be Lauren's FIFTH line of treatment but I am happy to still have options. Some families I know do not have that luxury and it breaks my heart. My first step will be calling the insurance to find out in a general way if they will cover ablation for pulmonary lesions/metastatic disease. Without knowing the answer, we cannot move forward. In addition, I am waiting for more information from Lauren's ND about a test that can be ran prior to starting the Topetecan, as it's sister, Irinotecan has been known to certain people with a specific variance in their enzymes to be *more* toxic to a person without this variance. It's still unclear if this is a problem with Topetecan. Hence, the opening story ... my fear of a toxic reaction she may never recover from. And the side effects list from the Cytoxan are crazy. It in itself is a carcinogen. Again choosing the lesser of two evils isn't easy at all. So the very chemo we use to save her life may cause a secondary cancer. Oh, that's just great (said as sarcastically as humanly possible). Sigh.
So, do we choose the red pill or the blue pill?
peace and <3
-cherri
Saturday, February 2, 2013
Thursday, January 10, 2013
Chronic Illness is NOT Okay.
Ever seen the side effects list from a chemotherapy drug? Normally they are listed in three categories -- most likely, less likely and least likely. Under most likely is stuff like nausea and low blood counts while least likely is usually a secondary cancer and death. Usually the most likely will most likely happen. Over the last three years, Lauren has experienced nausea, vomiting, loss of appetite, weight loss (20 lbs in one month), hair loss, hypersensitivity to skin (specifically hands), low blood counts resulting in the need for transfusions, nose bleeds, severe neuropathy that took away her ability to walk unassisted, mucositis so bad she had to be admitted for IV pain management and radiation burns that were in places that NO ONE should ever have skin burns. That's just the short list.
Precursor for the rest of the blog entry -- Lauren and I have talked a lot about how personal these issues are for her, especially being a 15 year old girl, but we both feel that telling her story, in full, may benefit someone else out there that is newly diagnosed. Precautions, at least for some of what she is experiencing, could and should have been taken. Fertility should have been discussed. I've written several times about the seriousness of her radiation side effects. Aside from the fibrosis (no immediate concern, but eventually I am sure she will want to have an intimate relationship), the normal growth of her uterus has been stunted and she will always have the uterus of a 12 year old making it impossible to carry a child to full term. No precautions were taken to harvest eggs or at the very least, tissue so that she could, when the time came, produce her own child. This very thing weighs very heavy with her and it breaks my heart every time we talk about it.
The latest in the barrage of radiation side effects is chronic urethritis, although right now, it is still "undiagnosed". Since September, she has been dealing with classic UTI symptoms, but each time I have them run a culture (this week will be the fourth) nothing grows. Again on Tuesday she presented some pretty serious pain so I had the clinic run another UA. The dip done at the clinic showed WBC and protein present in her urine, but the absence of an increase in her WBC in her blood don't point towards an infection. We opted out of an antibiotic prescription until the culture comes back, because once before the same thing happened yet nothing on the cultures. Anyone who has ever had a UTI or bladder infection knows how uncomfortable and painful they can be. Imagine having those symptoms for over three months. Now, some days are better than others, but when she does have a "flare up" it comes on with a vengeance. The oncologist doesn't really know what to do. The ND thinks that Lauren's body is under a tremendous amount of stress and this is how her body is reacting to the stress. When someone is stressed, nervous or anxious, the organs most affected are the kidneys and bladder so I guess it does make sense that this is where she has the most problems right now. Baths help, as does cold compresses. Medicinally, she is taking some natural stuff (D-Mannose powder and kava capsules) to help, but aren't instant. I have noticed that the more hydrated she is, the better she feels (all around) but it's been difficult to get her to drink massive amounts of water (doc wants 2-3 liters per day). I number the caps of water bottles to keep track. Some days she does really good, but the days where she isn't feeling well (when she really needs it the most) it's almost impossible to get that much water into her little body. It's a touchy subject here at home between the two of us (who said being a caregiver was the easiest job?). Sometimes I become the water police and it's not a fun job (same goes for pills/medications). So today, our home healthcare company delivered 14 liter bags of saline, some pre-filled saline/heparin syringes and a folding IV pole. The only other solution would be to take Lauren to clinic everyday for IV fluids and who knows how much that would cost?!? If she could have her chemo infused here at home she would. You are never as comfortable in the infusion center as you are at home <3
We (me and the ND) talked about hyperbaric oxygen therapy (HBOT) again. I want to explore this more because it can have real healing effects for Lauren and the radiation damage. She is already taking a few things to direct blood supply to the fibrosis to help along the healing process. I am still very open to other "alternative" treatment options as well and believe me, we have discussed some very alternative options. We will never put "all of our eggs in one basket". It's still very hard for me to trust the conventional team and just in the last six months have started to build a relationship. Even though Lauren was treated at CHO and these doctors travel from CHO to Reno, I met Onc#1 the day Lauren was admitted (December 17, 2009) and maybe saw her in-patient once or twice. Our primary was a fellow and he left the hospital in May 2011 to finish up his fellowship in Africa (we still talk in email). He was awesome, but we too had a bit of a rocky road. I am 100% sure it was my persistence but somehow we came to an understanding and it was all good. Most pediatric oncologists aren't open to CAM and I am just happy that ours are (some more reluctantly than others) and have been working wonderfully together. They all love Lauren very much and only want the best for her. That's all I can ask for right?
Now that Lauren is mobile again she has been asking us for a bicycle. We were hesitant because she still has some neuropathy in her feet, primarily the right one. It's impossible for her to stand on her tippy-toes and unless she wants a bike made for a kid, she will need to tippy-toe to stop and start. We didn't think of this when she asked for a bike from the foundation, who adopted us for Christmas. She is now the owner of a hot pink cruiser! We did give her the present a few days early and were disappointed but she was determined to ride with the wind. At that point, it really wasn't safe for her and I was scared to death that she wouldn't be able to stop and would have a bad fall. We searched for adult size tricycles online thinking that would be her best bet while still trying to heal from the neuropathy. Unfortunately, they are not cheap. The same day Jim and I discussed the trike, I got a Facebook message from a dear friend from Dallas. Vickie and Norman Prewitt are family friends who I have known since I was a teenager. Norman was a Firefighter/Paramedic with my dad and I love him like a brother. Their Sunday school class wanted to help our family. Their donation helped us buy Lauren an adult trike and we paid for express shipping to get it here by Christmas. It's perfect for her and it has a basket in the back that Lola can ride in =). Needless to say, we are truly blessed by wonderful friends and family and this Christmas was awesome for our family because of those friends and family. Thank you so much to Vickie and Norman, to The Northern Nevada Children's Cancer Foundation and the office that adopted us (PMA) and everyone else that sent Lauren presents. Our cup runneth over xoxoxo
If you are a close friend, you will know my undying love for all things Bob Marley. His life and music inspire me to be a better person, to love harder. Lauren drew and painted a picture for me for Christmas and I must say I almost cried when I opened it. As any mother can agree, the homemade gifts always mean more...
Lauren wants to do a couple of drawings to raffle off for Team Lola and I think that is a great idea! So stay tuned for her next work of art =)
It's taken me three days to write this blog entry. It's been really tough concentrating and I am glad I am finally done =)
I will close this post with a dedication to a little nine year old named Vinny. I had heard about Vinny through Ariel's momcologist Crystal around a year ago. He has Rhabdomyosarcoma, the same cancer as Ariel. His journey started almost five years ago and he has already been sent home before on hospice only to rally and come back fighting. This time, as his momcologist Sarah writes, is different. A month ago he was expected to live hours or days and he is still holding on but a CaringBridge update last night told us that he is starting to fade slowly. I ask everyone reading this to please lift this family up in prayers. Vinny is so brave and like Lauren, seems too wise for such a young soul.
peace and <3
-cherri
Precursor for the rest of the blog entry -- Lauren and I have talked a lot about how personal these issues are for her, especially being a 15 year old girl, but we both feel that telling her story, in full, may benefit someone else out there that is newly diagnosed. Precautions, at least for some of what she is experiencing, could and should have been taken. Fertility should have been discussed. I've written several times about the seriousness of her radiation side effects. Aside from the fibrosis (no immediate concern, but eventually I am sure she will want to have an intimate relationship), the normal growth of her uterus has been stunted and she will always have the uterus of a 12 year old making it impossible to carry a child to full term. No precautions were taken to harvest eggs or at the very least, tissue so that she could, when the time came, produce her own child. This very thing weighs very heavy with her and it breaks my heart every time we talk about it.
The latest in the barrage of radiation side effects is chronic urethritis, although right now, it is still "undiagnosed". Since September, she has been dealing with classic UTI symptoms, but each time I have them run a culture (this week will be the fourth) nothing grows. Again on Tuesday she presented some pretty serious pain so I had the clinic run another UA. The dip done at the clinic showed WBC and protein present in her urine, but the absence of an increase in her WBC in her blood don't point towards an infection. We opted out of an antibiotic prescription until the culture comes back, because once before the same thing happened yet nothing on the cultures. Anyone who has ever had a UTI or bladder infection knows how uncomfortable and painful they can be. Imagine having those symptoms for over three months. Now, some days are better than others, but when she does have a "flare up" it comes on with a vengeance. The oncologist doesn't really know what to do. The ND thinks that Lauren's body is under a tremendous amount of stress and this is how her body is reacting to the stress. When someone is stressed, nervous or anxious, the organs most affected are the kidneys and bladder so I guess it does make sense that this is where she has the most problems right now. Baths help, as does cold compresses. Medicinally, she is taking some natural stuff (D-Mannose powder and kava capsules) to help, but aren't instant. I have noticed that the more hydrated she is, the better she feels (all around) but it's been difficult to get her to drink massive amounts of water (doc wants 2-3 liters per day). I number the caps of water bottles to keep track. Some days she does really good, but the days where she isn't feeling well (when she really needs it the most) it's almost impossible to get that much water into her little body. It's a touchy subject here at home between the two of us (who said being a caregiver was the easiest job?). Sometimes I become the water police and it's not a fun job (same goes for pills/medications). So today, our home healthcare company delivered 14 liter bags of saline, some pre-filled saline/heparin syringes and a folding IV pole. The only other solution would be to take Lauren to clinic everyday for IV fluids and who knows how much that would cost?!? If she could have her chemo infused here at home she would. You are never as comfortable in the infusion center as you are at home <3
We (me and the ND) talked about hyperbaric oxygen therapy (HBOT) again. I want to explore this more because it can have real healing effects for Lauren and the radiation damage. She is already taking a few things to direct blood supply to the fibrosis to help along the healing process. I am still very open to other "alternative" treatment options as well and believe me, we have discussed some very alternative options. We will never put "all of our eggs in one basket". It's still very hard for me to trust the conventional team and just in the last six months have started to build a relationship. Even though Lauren was treated at CHO and these doctors travel from CHO to Reno, I met Onc#1 the day Lauren was admitted (December 17, 2009) and maybe saw her in-patient once or twice. Our primary was a fellow and he left the hospital in May 2011 to finish up his fellowship in Africa (we still talk in email). He was awesome, but we too had a bit of a rocky road. I am 100% sure it was my persistence but somehow we came to an understanding and it was all good. Most pediatric oncologists aren't open to CAM and I am just happy that ours are (some more reluctantly than others) and have been working wonderfully together. They all love Lauren very much and only want the best for her. That's all I can ask for right?
Now that Lauren is mobile again she has been asking us for a bicycle. We were hesitant because she still has some neuropathy in her feet, primarily the right one. It's impossible for her to stand on her tippy-toes and unless she wants a bike made for a kid, she will need to tippy-toe to stop and start. We didn't think of this when she asked for a bike from the foundation, who adopted us for Christmas. She is now the owner of a hot pink cruiser! We did give her the present a few days early and were disappointed but she was determined to ride with the wind. At that point, it really wasn't safe for her and I was scared to death that she wouldn't be able to stop and would have a bad fall. We searched for adult size tricycles online thinking that would be her best bet while still trying to heal from the neuropathy. Unfortunately, they are not cheap. The same day Jim and I discussed the trike, I got a Facebook message from a dear friend from Dallas. Vickie and Norman Prewitt are family friends who I have known since I was a teenager. Norman was a Firefighter/Paramedic with my dad and I love him like a brother. Their Sunday school class wanted to help our family. Their donation helped us buy Lauren an adult trike and we paid for express shipping to get it here by Christmas. It's perfect for her and it has a basket in the back that Lola can ride in =). Needless to say, we are truly blessed by wonderful friends and family and this Christmas was awesome for our family because of those friends and family. Thank you so much to Vickie and Norman, to The Northern Nevada Children's Cancer Foundation and the office that adopted us (PMA) and everyone else that sent Lauren presents. Our cup runneth over xoxoxo
If you are a close friend, you will know my undying love for all things Bob Marley. His life and music inspire me to be a better person, to love harder. Lauren drew and painted a picture for me for Christmas and I must say I almost cried when I opened it. As any mother can agree, the homemade gifts always mean more...
Lauren wants to do a couple of drawings to raffle off for Team Lola and I think that is a great idea! So stay tuned for her next work of art =)
It's taken me three days to write this blog entry. It's been really tough concentrating and I am glad I am finally done =)
I will close this post with a dedication to a little nine year old named Vinny. I had heard about Vinny through Ariel's momcologist Crystal around a year ago. He has Rhabdomyosarcoma, the same cancer as Ariel. His journey started almost five years ago and he has already been sent home before on hospice only to rally and come back fighting. This time, as his momcologist Sarah writes, is different. A month ago he was expected to live hours or days and he is still holding on but a CaringBridge update last night told us that he is starting to fade slowly. I ask everyone reading this to please lift this family up in prayers. Vinny is so brave and like Lauren, seems too wise for such a young soul.
peace and <3
-cherri
Friday, December 21, 2012
Merry Happy Christmakwanzikah
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.
My wish for all of you is good health and lots of love for the new year <3
peace and love
-cherri
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
peace and love
-cherri
Monday, December 10, 2012
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
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
Wednesday, November 21, 2012
Mystery solved...
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.
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.
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.
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.
Wednesday, October 10, 2012
The Old "Wait and See" Approach
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
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
Monday, October 1, 2012
Here We Go!
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
peace and <3 -cherri
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
peace and <3 -cherri
Subscribe to:
Posts (Atom)