NEW UPDATE

we wanted to shoot a quick message out to let everyone know that we are now not going to chicago but philadelphia. i got a call late today and was told that facility can help and treat me so off we go still just a different direction.

please keep us in your thoughts and prayers. we are still suppose to be leaving tomorrow but due to the change in location i have been warned it could be a day or so longer. I have been alright with that so far since i know they will try to help but i think tomorrow morning at 10 when they call me i will know for sure how i feel if they tell me it's on wed. like it is supposed to be.

love,
ellen

new chapter

first we apologize for such a long delay of not respondning on the blog. we have been trying to get things in order since i returned from duke last thursday. i still am weak but do not have to use the wheelchair or walker that we rented. i did getting off the plane last week, which i can not thank enough to revoldts as i was able to fly home on a private plane. i do not think i would have been able to make it commerical or in the car until now. i am working hard on gaining weight back and hate to look in the mirror still so hence i'm not very clean as i avoid showers:)

our lastest plan is we... are going to chicago on tuesday. technically, zion, illinois, is about 30 miles outside of chicago and is home to the midwest branch of the cancer treatment centers of america.

www.cancercenter.com

the cancer treatment centers of america focus on all aspects of a persons battle with cancer. they feature an integrative approach that includes chemotherapy and radiation treatments, surgery, nutritional therapy, naturopathic medicine and spiritual support among others.

i really don't have too many details at this point. she will be evaluated on wednesday, when we get there. i know i will be staying there as well for either an inpatient or outpatient treatment. it's pretty cool. i am trying to remain positive as i did prior to our departure to duke.

we will continue to follow the blog now but the last week has been so very difficult-still is so we were quiet.

thank you for all the support and please please please keep the hope and prayers coming my way. i am really in need.

love, ellen

brief update

i went to pick up the report from dr. masters today. he gave me 20 pages on diet, health and lifestyle changes that ellen will have to make. he included foods that she should be eating and foods that she should NOT be eating. we have some work to do to build her up but she is ready for it.

we are still trying to figure out the visits. for the most part, ellen is still very weak and very tired so it is hard for her to stay up. stay tuned though, she is feeling better every day and it won't be long before she will be ready to see you all.

sorry for the delay

we arrived safely from north carolina but have been very tired, as you might imagine.

i know all of you have been eager to hear about our visit with dr. masters. it went well. he tested ellen with electrodes placed on different pressure points. after 10 minutes, he did the same thing and compared the results. ellen is showing a sever deficiency in her kidney and liver functions, her filter organs. she also has a problem with a particular pancreatic enzyme that he called the "eater-uppers". the cancer cells secrete a poison as they die off. this pancreatic enzyme is supposed to eat that poison as it appears. it's not doing so. these three things are what is stopping her body from healing.

he prescribed a supplement and a detoxifying liquid that she takes several times a day. his intention is to "build her up" before he attacks the cancer itself.

the way he explained what is going on in her body is so simple, so reasonable. it just made sense. he is fairly confident that he can help her. she is going to be changing her diet in addition to the supplements, so that will make a great deal of difference also.

we are still very encouraged about the new course of action. ellen is still very sick from the chemo but is fighting hard. she wants to feel better so that she can see everybody who has followed her battle so diligently.

please feel free to call us, 330.361.4141, and leave a message so that we may start to map out some visits. also, please don't be offended if i don't call back right away. she gets tired very easily and it will be hard to have many visitors for some time. we appreciate your patience but she IS eager to see everyone.

still coming home

i promised ellen that i would post every day, even if there isn't much to say. we are still coming home tomorrow. a friend of the family was kind enough to loan us his personal jet so we won't have to deal with baggage claim, security, etc. we will be in north canton around 11:30 tomorrow.

we can't thank everyone enough for the continued outpouring of support. in our darkest hours you shined a brilliant, white light on us. WE can see... thanks to all of YOU.

we will see you soon.

we are coming home

the tone of this post may seem very matter-of-fact. it is. we decided that everyone who has shown us the support that we need, and has followed us through every step of this journey, deserves to know what is happening. they deserve the care and respect that they have shown us.

ellen had an mri of her brain last night because the doctors had become suspicious of her inability to kick the nausea that has been so persistent. this morning, hillary, one of dr. gollob's p.a.'s, came in with the results.

the cancer has spread.

the mri revealed that she has at least 4 small lesions on various portions of her brain. soon thereafter, we met with a radiation oncologist that was able to better explain what had happened. when cancer metastasizes (enters the blood stream) it basically has free reign over the body. even in the face of intense chemotherapy, it was able to make its way back into her head.

later that afternoon we met with the lead radiation oncologist at dumc. he said that he was going to start a course of radiation that would last 10-14 days. the overall cure rate, however, went from nearly 5% to non-existent. this was taking precedence over the disease in the rest of her body but ellen was ready to do whatever it took. you would never expect anything less.

you would also not expect what came next.

dr. gollob visited later (unfortunately, while i was picking don and diane up at the airport). he told ellen, suzy and my mother, lola, that he was advising against the radiation. the treatment was clearly not doing what it was supposed to do and whatever little time the radiation provided would not outweigh the added discomfort it would cause. he was suggesting that she discontinue treatment all together.

we feel that we have made the correct decisions about her health care every step of the way. obviously, what is considered "modern medicine" is not the answer. whether it's her chemical makeup or some other reason, the chemotherapy has not had the desired effect.

so, we are going another direction.

almost immediately ellen rejected dr. gollob's diagnosis as the end of her options. she contacted a holistic doctor that she had seen prior to one of her other treatments. after talking with him our optimism is renewed. we are invigorated. he is very excited to see her and to get started again. he feels, quite confidently, that he can be of great help to her.

the details of this course of action will follow. right now, though, we are preparing to come home. i ask that everyone be patient as we adjust and settle in. ellen and i are beyond excited to see everyone but we do have certain things that require our attention first.

please make no mistake. this is not a negative outcome. we see it has the natural course of events that will lead her to full health through holistic healing.

we are more encouraged than ever.

still in the my room

i have not been able too write lately due to my memory and spelling, it is very hard for me to try to deal with this but i will write as soon as i am capable.

I JUST WANT TO TELL MY HUSBAND OF ALMOST 3 YEARS HAPPY 28TH BIRTHDAY!!! HAPPY BIRTHDAY RYAN, YOU DESERVE A GOOD ONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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last night was a little rough again. we are still trying to get ellen's dosages correct. today the doctors decided to put her back on a schedule so that she wouldn't have to fight so hard to get things back under control. she continues to try to eat. with the nausea such a nuisance, it is difficult.

she had an mri of her brain today. dr. gollob ordered it as a precaution because she hasn't been able to keep the nausea down. he also mentioned that, since she will be staying, he might be able to move the cat scan up to tomorrow.

rough night

we had a little trouble getting the pain and nausea medication right, last night. fortunately, the doctors and nurses put their heads together and fixed the issue. ellen had a great day, relatively speaking of course.

we played uno, because she won't let me teach her poker, and she went for a couple laps around the unit.

she still wants to go home tomorrow but because she has had so little to eat she is still a little weak. we have the cat scan on wednesday and may stay in the hospital until then.

nothing on tv

i asked ellen to help me with something to write this evening.

nothing really happened again today. she slept most of the time. i took another liter off her stomach earlier in the day. when she was awake she had plenty to drink and a few bites of a ham & cheese sandwich. she went on a short wheelchair ride but felt nauseous so we had to cut it short.

that brings me to the title of this post. when i said, "i don't know what to write. can you help me?" she said, "just write that there isn't anything on tv."

done.

another day

my intention, of course, is to keep everyone apprised of ellen's condition, her day to day life and so on. i am aware, though, that my posts seem to be getting shorter and shorter. the reason for that is simple: every day is about the same.

this is good news.

every day she does a little more in preparation for her release. i took another liter off her abdomen and after that she walked TWO laps around the unit. her heart rate was a little high (she walks a too fast, her condition be damned) but her oxygen was a very strong 94%. she was awake and talked with us quite a bit more, too. we didn't hear her creatnine level today which can be easily interpreted to mean that it didn't change. her blood counts are still low, expectedly, but, all things considered, she is further along at this point after the treatment than during the last course.

still progressing

ellen made more strides today.

her greatest stride, perhaps, was that she slept through the night but when she woke up, she kept her mother and me in conversation through most of the morning. THEN, she decided that she wanted to go for a walk. she was able to take a few more bites of food today and has been drinking plenty of fluids.

speaking of fluids, thanks to the pleurx catheter, i was able to remove another liter from her abdomen. she seems to feel better, and more importantly, breathe better when the fluid is removed. now i can take fluid off as her stomach indicates.

dr. gollob was in and said that she will, most likely, need to stay through the weekend. he wants her to be able to move around on her own without fear of a tumble. he mentioned her blood counts were still a little low and that was also a deciding factor. her creatnine is holding steady around 1.9.

she is scheduled for a cat-scan on wednesday. barring any setbacks, she will have the test that will determine the rest of her treatment.

pleurx catheter

i named this post "pleurx catheter" because that is the only thing that distinguished yesterday from today.

she was given platelets at 5 this morning to make sure she was prepared for the procedure and went downstairs around 8. she was put under mild sedation and came out about an hour later. she spent most of the day sleeping. after one of the p.a.'s came and showed me how to release the fluid, we removed another 3 liters, ellen woke up for a little while. she had a few bites of a sandwich and talked to her mom and me for a bit. since then she has been resting comfortably.

we are hoping that she can come around in the next few days and start to get her energy and strength back. keep thinking about her and sending any extra energy you might have. she needs all that she can get.

turning the corner, again

today started much like the last few days. ellen slept. dr. gollob stopped early in the afternoon. he said that her blood counts were down but he doesn't think that they have hit their low yet. he expects them to come down a little more in the next day or so. her creatnine count stayed steady at 1.8.

we talked about the possibility of the plurex catheter. this is the temporary tube inserted into her abdomen so that she can release fluid whenever pressure builds. he said he would talk with the other doctors and make a decision later in the day. his p.a. later informed us that she would be having the procedure done tomorrow.

about the same time, she woke up, completely, for the first time in a few days. she was able to sit up, drink some water, eat A jello cube and talk to her mother and me for a while. it was nice to have her awake and lucid for a bit. of course, as much as she wanted to fight it, the pain and nausea came back and she needed some medication.

she is sleeping comfortably, again.

continuing progress

we met with dr. gollob early this afternoon. ellen's creatnine count is up to 1.8. that is up again from yesterday but it still isn't rising at the alarming rate that it did during the last course of treatment. he told us that all of her blood counts are down, slightly, but that they aren't down further than expected. everything is following the same trend that it did during the last course. the good news, though, is that nothing seems as severe as it was before.

over the next few days, if the trends hold, she should gradually feel better and get some energy back. hopefully she can get out of bed and go for a walk, maybe have something to eat. this time, however, we will discourage her from a krispy kreme for her first meal. it will be exciting again, when she says that she's hungry, but we won't make the same mistake again.

the plan going forward, as dr. gollob explained, is to help ellen recover from the treatment and allow her body to rebound. in a few weeks she will have a cat-scan to determine the effect that the treatment is having on her body. at that time, it will be decided whether she will continue on with this type of chemotherapy.

keep sending good thoughts.

recovering

i really wish i had something to say this evening. fortunately (or unfortunately, depending on how much you enjoy my writing) there isn't a lot going on. ellen has been resting comfortably. don, suzy, chuck, connie and i sat in her room and chatted on and off for most of the day while she slept.

her creatnine count went up, slightly, to 1.6. this is above normal but still within reason and CERTAINLY better than the skyrocketing numbers from before. dr. gollob is planning on seeing us tomorrow. i'm sure he will be able to shed some light on the next step.

hope everyone is well and continuing to send their positive thoughts and energy ellen's way.

last day

ellen completed her second round of treatment today. her uncle chuck and aunt connie came in today. they spent a long time visiting with her (well, at least when she was awake). she slept, again, for most of the day and she had another paracentesis. they removed ANOTHER 3+ liters from her abdomen. she was far under the influence of the many narcotics and wasn't awake for any of the procedure. that's a good thing.

dr. gollob dropped all of the different forms of chemo down to 4 days with the hopes that she will recover more quickly.

her creatnine count is up to 1.5. this is only slightly over the high threshold of 1.4. we're hoping that it doesn't make a drastic upswing like it did during the last course of treatment. overall, she handled this round much better than the last one. again, i credit this to the adjustments that the doctors made in all of her different medications. she seems much more comfortable and hasn't shown the side effects as strongly as before.

that is a very good thing.