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
Showing posts with label CAM. Show all posts
Showing posts with label CAM. Show all posts
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
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