Sarah

Direct donations (amount of your choice) to Sarah's Medical Fund through Paypal are very welcome and appreciated. Thank you!

For Sale: Canvas Bags designed and created by Sarah's sister, Kim. All proceeds to benefit Sarah's Medical Fund Add color choice (white or ecru) in comment section when you order.

Feb. 25,2004: My daughter Sarah (age 21 and married only 6 months) was diagnosed with a brain tumor two weeks ago. Last week, she underwent surgery to remove part of the tumor. The rest of the tumor was inoperable due to it's position. She has made remarkable recovery, though she still has a long ways to go. Friday we were giving the news that there were problems with the pathology reports and we may still be dealing with cancer. Today, we went to have her sutures removed and were told that the pathologist had confirmed that Sarah has Hodgkin's Disease. Sarah is devastated today but I'm am still living on hope. For the first time in two weeks, I heard the word "cure" as a possibility and I'm holding on to that word fiercely. She will need chemo and radiation and we are awaiting word on an oncologist at this moment.

Sarah has no insurance and that has been a major problem from day 1. I had to threaten the hospital with lawsuits if they denied or delayed her care because of her lack of ability to pay and lack of insurance. The neurosurgeon has been wonderful to date. I'm hoping the Oncologist is as wonderful and willing to work with Sarah.

Sarah meets with her Oncologist next week. She had a little setback yesterday with a Spinal Headache. The little wound from the spinal catheter placed in her spine during surgery did not close so she was leaking cerebral/spinal fluid causing her extreme pain. They did an emergency blood patch in the area to help seal the wound and she is on flat bed rest for the next couple of days. Otherwise, the "cup half full" girl has recovered her positive attitude. You notice every picture of Sarah shows her radiant smile.

Keep praying! There MAY be good news on the financial front. I found a Patient Advocate Foundation to help with insurance matters and there is a possibility (keep your fingers crossed) that Michael's job HAS to pick Sarah up on his insurance and a possibility (pray harder!) that they have to do it without considering this a pre-existing situation. It's a long shot, but pray! It will not cover the bills to date if it happens and those bills are already outlandishly high! Donations will still be desperately needed to help cover some of the bills so far.

Sarah met with her Oncologist today. They were supposed to run various tests to "stage" her disease but the tests cost about $7000 total, with the petscan alone costing $4000. Ouch! Just to stop and say "hello Dr." today cost us $540.00. Each visit after today will be $66.00-$291 unless they actually do something to her, then it will be more.

We discussed it with the oncologist and he told us that we could afford to put the tests off just a couple days if we wanted to see if the insurance issue gets resolved. We still have the Hill-Burton act invoked at Seton so they are going to try to see if the tests can be done at Seton. They are also trying to see if they can get Sarah qualified for a program at Brackenridge that would give free chemo treatments. Let's hope and pray.

On a personal note, I'm very frustrated and angry at the system. IF Michael and Sarah were to agree to separate, they could qualify for help and a couple "agencies" have even suggested this. Is this not what is wrong with our country? That we force families to break apart in order for them to get help during such catastrophic events. They discourage families from staying together, from working to better themselves because one must either be extremely poor to get help or one must be wealthy enough to afford to get the help they need on their own. And yet the politicians shout about "family values" when the entire system is set up to destroy the family and keep it down.

My daughter NEEDS her husband right now. That anyone should tell her she has to do this without him in order to get help is shameful and downright inhumane! We should NOT force people to go through things like this alone! ack!!!!!!!!!!!!!!!!!!!!!!!!!

If the insurance does not pick Sarah up, she will NEVER be able to get health insurance as she will be considered "uninsurable".

I'm going to get off my soapbox now but to think my daughter not only has to go through the fight of her life to keep her life, she has to be stressed and worried about how she can afford that fight and how will it happen if she can't....it's just unforgivable.

The results of some of the staging tests have come back and indicate cancerous nodes in Sarah's chest. The Oncologist did not indicate surgery was needed to remove them. She had her bone marrow biopsy this morning and has her Petscan rescheduled for Monday. This will let us know if the cancer has spread to her bone marrow and other organs.

Tues Morning, Sarah is scheduled to have surgery to place a Port Cath beneath the skin of her chest. This is because her veins are very small. The Port will allow blood to be removed easier, chemo to be given, etc without having to try to find a vein every time.

We were told today that chemo will be given once every two weeks for 12 treatments, with radiation therapy in there somewhere.

The Oncologist also told us that we had to get all Sarah's cavities filled, fluoride treatments, and special oral care set up before we started chemo or she'd have a mess with mouth sores during chemo. Yikes, another $500 gone in one morning but the Dentist was VERY good at explaining to us why it was so important, what to look for and what Sarah can do to keep potential problems to a minimum. Even gave us his card to call if we had any questions later.

We really weren't sure until we walked into the doctor's office this morning that we had pulled it off or not!

The doctor kept asking us today how we did it! He said it was an amazing feat and he'd never had a patient get insurance after they'd been diagnosed before. It wasn't easy, believe me. That crappy discount card she had may not have paid for Anything and in my opinion, could in no way shape or form be called insurance (how do they get away with selling these things to people when they don't cover anything?)...., but somehow, by some miracle, it DID count as credible coverage qualifying her for cobra, which according to HIPAA laws, allowed them to get insurance with Michaels' group insurance plan at his job. Having a lawyer (the Patient Advocate) helped. There was also a deadline that we were working against and getting the insurance company to send the correct paperwork in was a major hurdle, hassle and hair tearing out event.

The Patient Advocate Foundation kept telling us it would work, no one else seemed to think it would. So many times, we nearly gave up, but she kept telling us it was going to happen and telling us exactly what we needed to do and when for it to do so. A lot of breath holding around here, sleepless nights, frantic phone calls, frayed nerves wondering how long we could afford to wait, etc...how we could afford what she so desperately needed NOW......the doctor looking at us like we were nuts when we asked or even suggested we were still working on the insurance.

(Note: If you or anyone you know is in a similar situation, the phone number for the Patient Advocate Foundation is 1-800-532-5274)

. I read in the book the doctor gave us that cost of one patient for cancer would run $1,000,000 for their lifetime. There's no way I could have sweet talked or argued our way into that kind of care! The doctors were spending our money several times faster than we could raise it as it was. There would eventually have come a point (and I had feared that we had already reached it this week) when we would owe so much money, that they would just tell us no.

The insurance came just in time, when we had run out of resources. There's staggering debt, but we'll figure it out as we go. At least I know that Sarah's care will be easier to come by now (meaning I won't have to threaten anyone or promise away Sarah's future and life to get it! )and in a timely manner! The copays and deductibles we will have to pay would have overwhelmed me two months ago...but after paying $550 for one visit to the doctor, they sound pretty darn reasonable in comparison.

Thank You for the generous gifts of money, prayers and support. I know they were responsible for this miracle! You gave us hope, supported our faith, helped us find resources and get Sarah into doctors and treatments.

I know with your continued support, prayers and gifts, Sarah can beat this. After all, we've already performed one miracle, surely there are more in store for Sarah!

Sarah's surgery for the port-a-cath was delayed till this coming Friday due to the insurance company's delays. Sarah went today to Oncologist to get test results back. Bone Marrow Biopsy came back clean. YEAH! .....More cancer was found than we were hoping for or expecting. :( Cancer was found in nodes on both sides of her neck, in the chest cavity (which we already knew), in the nodes on the right side of her body and in her spleen, plus the tumor in her brain that is inoperable.

She will start chemo Monday. The doctor wanted to start tomorrow but we all felt like we had too much information to process today and with Sarah's surgery on Friday, it was too much for her to try to do in too short of a time span. The chemo will be every other week for 6 months, with more tests, etc in between to gauge progress, keep an eye on blood count, etc. Radiation will then start for the tumor in her brain.

Sarah was expecting her hair to fall out, but none of us expected to be told it would all fall out very suddenly, within a 24 hour time span a few days after her second treatment. Now that sounds like a traumatic experience to me, I'm sure it sounded like one to Sarah too.. I know she was feeling overwhelmed and upset when we left today. Let's hope she bounces back quickly.

It was a busy week. We thought things would slow down once chemo started but found out otherwise. She needs to go back frequently between treatments for lab work so they can monitor her health and response to the treatments. We were both a bit disappointed to find this out. I know she is wanting VERY much to get back to some kind of normalcy which is very hard to do when we are driving to Austin several times a week for Drs. For me, I'm assuming she's getting VERY tired of my company. We joked that we didn't see this much of each other when she still lived at home. My oldest daughter will be taking her to a couple apt in the next week to give Sarah a new face to look at and give me time to get items mailed out from the fund raising auctions and to catch up on other things I need to take care of.

Sarah's post op visit with the neurosurgeon went very well. He wants to do another MRI in a couple of months to make sure the brain tumor is not growing again. Otherwise, he was very pleased with how well she was doing. She does look 100% better than she did at her last visit.

Sarah recovered well from her surgery to insert the port-a-cath though the surgery site was painful for a few days. She also had her first chemo treatment this past Monday. Inserting the IV's into the painful portacath site was extremely uncomfortable but otherwise, the 4 hour treatment went well. She met another Hodgkin's patient her age who was there getting her 10th treatment. They talked a lot about her treatment and Sarah seemed very reassured that chemo appeared "Do-able".

The anti-nausea drugs they gave Sarah really worked! She experienced extreme fatigue and lack of appetite for a couple of days. The site of food made her nauseous. On Thursday, after her post op visit with the surgeon who put her port a cath in, she said "I think I'm hungry"....for Italian food, no less...so we immediately stopped and fed the girl a plate of spaghetti and garlic bread.

I apologize for the lack of updates. Hubby adjusted something on my computer that wouldn't let me upload new pages. Had to figure it out and fix it so I could update.

After Sarah's second chemo, our schedule slowed down some and we finally had some time to catch our breath. It was unfortunate for me, as I had just been too busy finding health care and the means to pay for it to really let Sarah's cancer sink in to my mind. And then it suddenly seemed way too real. It hit me pretty hard there for about a week until I had a chance to get my mind around it a little bit better. That also caused part of the delay in updates.

The easier schedule has been wonderful for Sarah, she began to feel that maybe a "life with cancer" may be possible after all.

Sarah has received three chemo treatments to date, just 9 more to go. They had to increase the dosage after the first one as her blood counts did not dip low enough to indicate they had given her a high enough dose. She seems to be tolerating it fairly well though it does cause extreme fatigue, loss of appetite and some nausea. We usually take her out and feed her a HUGE meal before each chemo as it will be her last meal for a few days and we want to make sure she enjoys it.

Sarah started losing her hair over a week ago. It was a very traumatic event for her. Meeting the other Hodgkin's patient had given her the false hope that her hair would not fall out. After four days of severe depression, she chopped it all off to about 1/2 in. long all over. And yes, she's still adorable looking! The shorter do gives the impression that there is more hair there than there really is and she feels a ton better about it now that it's short. She has learned that though her long red hair had been a beautiful thing, it did not define who she was or whether she was beautiful with or without it. Once she cut her hair off, she seemed to lose any self consciousness about it. Yeah!!! I'm hoping to have a photo soon to share with you her new "do".

The doctors have set up appointments for petscans and mri's sometime in the next month to monitor both the remaining brain tumor's growth or lack of (we're hoping) and the progress of the chemo on the cancer in her body.

Sarah's older sister has been taking her the last few visits. She wanted to know and understand better what Sarah was going through. And I thought it would be nice for the girls to do this together and it would also give Sarah a "new face" to see besides mine. They are tremendously enjoying their time together though a lot of that enjoyment seems to be at my expense as they "share" with others some of the stupid things I've been known to do. I'm almost afraid to go back to that place when it's my turn again. :)

Sarah is doing fine, mostly learning to cope with the side effects of chemo. Thank you to all who purchased headgear for her! Since she is still steadily losing her hair, she will be using them shortly.

I also want to thank all who participated in the 4Sarah Auctions to help raise money for Sarah's medical bills. I am currently working on negotiating with the providers for reduced bills. Though we raised several times the amount we had expected to raise, it's still a drop in the bucket compared to the bills that accrued prior to the insurance.

Our hearts have been touched over and over by the support, love, prayers and help that we have received from around the world. Thank you!

Sarah is a very tough girl and my family has been amazed at her strength, her endurance, her faith. Even when she has a few bad days, overall she remains positive, not letting anything get her down for very long.

Sarah goes to chemo once every two weeks for a total of 12 treatments. She will be having her fourth treatment this coming Monday. We try to feed her a big meal right before each treatment as it is the last meal she is able to eat for several days after treatment. There is mild nausea but mostly the chemo leaves a bad smell and taste in her mouth for several days that leaves her without an appetite. She also pretty much sleeps for the first two or three days after chemo. The following week, she has to go in at least twice for blood work to make sure that she has hit her "low" and then again to make sure that her blood counts are coming back up enough for the next chemo treatment. They also watch certain counts to check if she is vulnerable to infections in which case there are a lot of dietary restrictions as well as hygienic precautions she has to take. So far, she hasn't fallen into this danger zone. All medications, dental appointments, etc have to be checked against her blood counts before the doctor will okay them.

Sarah says that the chemo leaves such an unpleasant aftertaste and smell that she is beginning to associate it with all medical procedures. In order to keep herself from getting sick during simple procedures like lab work, she refuses to allow them to use the portacath and continues to offer up her arm veins in an effort to disassociate it from the unpleasantness of chemo. She says that just talking about some procedures makes her queasy.

We've been told that after the last chemo, she will then do radiation on the remaining brain tumor every day for three weeks. These take only a few minutes each so we are hoping that we can find someplace closer to home to do them. We've been told that the chemo really does not go into the brain that well, so this has been a worry for us.

She continues to be on anti-seizure medication and is still not allowed to drive. Her memory is gradually improving though it still upsets her when she can't remember things. her fine motor skills are also improving quite a bit.
The doctor said these would continue to improve though it might take as long as 6 months to a year to get back to normal.
Sometime in the next two weeks, she will be scheduled for another petscan to monitor the cancer in her body and if it is responding to the chemo or not.
Again, keeping our fingers crossed on that one too.
This week Sarah had a follow up MRI on the brain tumor and yesterday visited the neurosurgeon to get results. The doctor visit went VERY well. What a difference in these newest scans compared to the previous ones that detailed the tumor. There's some very small areas of scarring and damage to the brain due to the surgery and the placement of the tumor but so far, it doesn't seem to be anything that seriously affects Sarah. There is NO return of the brain tumor that was removed nor any new tumors. The doctor showed us the area where the remaining tumor is located and that looks completely different as well. Much lighter in color and smaller than it had previously been. He said it was his opinion that the chemo IS working on that tumor though he could not state that as a positive or how much the chemo is effecting it. He said that they would do the MRI again in three months and compare those to this set and that will indicate better whether that is happening or not. She'll still require the radiation treatments regardless. She passed all the neurological tests with flying colors and he was delighted with her recovery to date.
I was sweating bullets going in but felt such relief afterwards. Sarah of course had no doubts about a positive outcome and seemed surprised when I told her I had been nervous about it. What can I say...I'm a mom...it's my job to worry. :) Hopefully the petscans in a couple of weeks for the tumors in her body will look as good!!!
The cancer center has been amazed that Sarah's blood counts remain so high despite the increased chemo dosage and continued treatments. Yesterday they called her "invulnerable" and "indestructible".

Sarah herself has no doubts about her recovery or her health. To her, this is all just something she has to get through until she can get back to work. My precious little girl, so feminine and delicate all her life, was the least likely person I expected to be the strongest person I know.

I'm sorry if I don't update as often as I used to do. At this point, our schedule is pretty basic as long as everything is going fine. Chemo every other week, a couple days of chemo yucks, the next week blood work a couple of times a week, then the schedule starts over. Sarah's friends are wonderful, taking time to schedule things during the week with her and being wonderfully supportive and helpful.

This week was busy. Sarah had a small setback. We went in on Monday for her chemo but her blood counts were way too low. They gave her a shot and we've been back every day since. She got another shot on Tues, then yesterday her counts were high enough to schedule chemo again for this morning.

Yesterday, she was scheduled for a CTScan to check on the cancer in her body. The nurse called this afternoon after we got home from chemo to let us know that the scan showed that only the cancer in her spleen remained. Let's hope! Last time they told us there was just a little bit, we got to the next doctor appt and found out there was a LOT of cancer. But we're going to keep our fingers crossed that this time, the nurse was right.

We are also waiting for the doctor's office to schedule a pulmonary function test. This was supposed to be scheduled three weeks ago but they still haven't done it. Great doctor and nurses, it's the support staff that sucks. Don't worry, we are not letting the week end without that test scheduled. Sarah takes ABVD for her chemo treatment and one of the drugs can cause permanent lung damage. The test is required to see how her lungs are doing so that particular drug can be stopped if damage starts to occur. I'm REALLY going to be upset if damage occurs due to the laxity of the scheduling dept.

Sarah finally got the pulmonary function test scheduled and completed but we haven't heard results yet. Took some nagging on our part, but we got it done!

The cancer center set up a support group for young women with cancer and they had their first meeting May 22. They treated the girls to foot and body massages, breakfast and lunch cooked by the staff, plus some classes in coping with cancer. Sarah loved it! They took a photo of her soaking her feet and I'll try and get that uploaded in the next day or two. I'm delighted that they treated the girls to this. Sarah has shunned support groups to date because she didn't feel she had much in common with the mostly older people who attended. The theme of the new support group is "I can't have cancer, I have things to do". Something Sarah definitely identifies with.

We also had GREAT news this week. Sarah received her Social Security Award letter letting her know that she qualifies for disability benefits. YEAH!!! She won't receive her first check until the end of Sept, and they'll have to continue muddling through till then, but it was a huge relief to them to find out there is hope on the horizon as far as income goes and their ability to make ends meet. It's not a huge amount due to her limited work history (due to her age) but it's still a relief to know that much is going to be there for them.

I was gone for the last two weeks, first to the IFDC Convention and then on to Houston for a brief vacation to celebrate my 5th wedding anniversary.

While I was gone, Sarah's father had a massive stroke so the kids have been pretty stressed. When I saw Sarah, she looked very tired. I'm hoping that is because I woke her up from a nap and not that she's been overdoing things. I talked to her often while I was gone and she sounded very depressed at first, then I could hear in her voice that things were going better. She did go to chemo while I was gone as well. I don't have much to tell right now as I'm still playing catch up, with the kids, the site, etc. I'll know better later this week how things are and give you all an update. The girls (Sarah and her sister Kim) had made some doll purses and canvas bags for me to take to convention. We were able to raise another $300.00 for her medical fund! YEAH! I still have some of these left if you would like to purchase one.

Sarah just completed number 8 of the 12 chemo treatments that she is scheduled for. July 7th, she goes back again for another pulmonary test to check her lungs again. The chemo is getting rougher and rougher on her, with each treatment being a struggle for her to get through. She is often sick during treatment or fighting it and it is sometimes a losing battle (especially when others getting treatment at the same time are in the process of losing their own battles with the nausea). It is wearing her out and I pray that when this is over, it's done and she doesn't have to go through this again. I'm not sure we could talk her into it again. She's also beginning to suffer some other side effects such as hiccups and a VERY severe burning, itching rash on her face. Thankfully that cleared up fairly quickly with some Benadryl but it was extremely unpleasant for her to go through. We also think stress might have something to do with the rash as well as the doctor did not feel the chemo was solely responsible.

There is a tremendous amount of stress right now. Sarah's father suffered tremendous damage during his stroke and the kids are now faced with some hard decisions regarding his future. I wish I could help them but it's not my place to do more than guide or advise them, be there for them.

When Sarah got sick, my family pulled together in support and love. But now, another tremendous event has happened in their lives and instead of pulling together once again, as they have proven they can do, the opposite is happening. Sarah is basically keeping neutral in the whole thing and that's good and smart because she has enough on her plate. However, what is happening still affects her and makes her sad and upset. It's difficult for me to write much about what's happening here. I see each one of my children struggling with the fears of what has and will happen to their father, the stress of making the long trip to visit him regularly and keep up with what is going on with his health, what arrangements need to be made regarding his care when he's released from the hospital. Each of them are also now dealing with the knowledge that they will probably never be able to address the issues they have with their father, and will just have to learn to deal with those issues on their own, yet each were willing to put that aside for now because he NEEDED them. I'm PROUD of each of them for doing that, each and every one of them, for being loving adults who can put aside their feelings about their father to do what they know is right for him, to care about what is happening to him. None of my children should have to be dealing with these issues on their own, when they need the support of the others so much. I do not know what happened to change that, but I get the feeling something or someone did just that. And I am not happy, nor will I allow things to just roll along getting worse between them. That isn't who I am or what I can accept and tolerate. Sarah needs her family, strong and supportive....I need them....and they NEED EACH OTHER!!

Sarah says she's feeling great today though yesterday was rough. She's hanging in there, even went so far as to plan and have a wedding shower for one of her best friends this past weekend, calling me for recipes, etc. She's be 22 in just one month, July 28. Just two more months until she can drive again. Just four chemos more to go Sarah!

After talking to the kids the past couple of days, think we have many things straightened out. Emotions ran high, misunderstandings happened, on my part as well as on theirs. I know they didn't want to have to confront some of these things right now, but the air is cleared and hopefully, they can be the support for each other that they each need. And I can quit worrying so much. :)

Sarah had an ear infection last week and though the doctor gave her antibiotics, she's still feeling poorly. Her blood counts were down this morning, not quite enough to delay chemo, but enough that she'll have to go back tomorrow for a shot to try to get her blood built back up. She's fairly miserable.

Chemo has been getting rougher for Sarah. None of the anti nausea drugs are working well enough to keep her from getting violently sick during chemo. Today was #10, just two more to go, but today was the very worst day so far. I think that if the first time had gone like today, we'd have never have gotten Sarah to go back. I talked to her sister later this evening and she said that is exactly what Sarah had told her too.

I think the psychological effects are starting to play a factor in Sarah's ability to get through chemo. She usually does not allow them to use her portacath to draw blood, but saving it strictly for chemo because of the associations with it to the chemo. When they do the flush on it before and after using it, that's the trigger to start the vomiting. I understand they first use a sterile saline solution or sterile water, then a Heparin flush to keep the blood from clotting. That gets her to worshipping the porcelain alter in a big way..

Today, they had to use the portacath to draw blood as they simply couldn't find a vein in her arm. So she was vomiting before they even got the chemo hooked up. She burst into tears, saying "I don't want to be here anymore, I'm sick and they haven't even hooked me up to the chemo yet". The nurses brought her some ginger ale and crackers and told her to go sit in the waiting room and let her stomach settle a little bit before trying the chemo. Well...that might have worked except an elderly gentleman with diarrhea came walking through the waiting room leaving a nasty trail behind him. I felt sorry for him, how embarrassing that must have been for him. But....it wasn't exactly what Sarah needed at the moment. She tried to tough it out but I could see she was turning pale and starting to sweat so I grabbed her arm and said "let's go find someplace else to sit".

Back into the treatment room we went. We tried to chit chat and tell jokes and get her mind off the coming chemo and it seemed to work until they started hooking her up again. Just the regular IV, no chemo yet and she was already reaching for the waste basket. She knows that this is a psychological reaction, getting sick BEFORE the chemo, yet that doesn't seem to be helping her any. They ended up having to give her a sedative to help her get through today's treatment. It truly was the worst one to date.

The nurse talked to the doctor and he doctor prescribed a drug for her to take the night and morning before the next treatment and let's hope that works better. He also gave her one to take after the treatment. She took it as soon as she got home and then went to bed. Let's hope it helps.

Friday she is scheduled for another MRI on the brain tumor. She'll see the neurosurgeon Tues while I'm gone to convention. She'll get the results then. Keep your fingers crossed and send lots of prayers that all this is working!!!

July 28, 2004

Sarah will be going to California for an extremely short visit next week to help one of her best friends drive her car back from there. Her friend is newly married and had gone to California to be with her groom before he was deployed to Iraq. Her friend will be paying for Sarah's flight out there and all expenses home. Though I'm worried about her getting home in time for the next chemo, I'm also delighted for her. The girl has definitely earned it! After this past chemo, she really needed a pick me up and something to look for. She looks so normal and good that week before each chemo, those who have never seen her during and right after chemo don't really understand what she goes through every two weeks in her fight against cancer. And not just once or twice, but EVERY two weeks for 6 months!! She'll be leaving the day after her neurosurgeon's appt. so she's been careful to schedule around her doctors and chemo. I just hope she doesn't overdo things so she's too run down to get her chemo when she gets back.

She's VERY excited to go! I'm really hoping that Sarah's friend makes sure she gets a day at Disney before they head back to Texas. I know that would be one of those "experiences of a lifetime" to someone who is as nuts about Mickey Mouse as Sarah is!

I'm back from convention and Sarah is back from California. Sarah didn't get to go to Disney didn't get deployed until later in the week than planned so things didn't work out for her. However, Michael plans to take her back in a few months to make sure she gets there! She picked up a terrible hacking cough from the smog in CA and complained that she had had a hard time breathing while she was there. She got back in time for chemo and was miserable afterwards, between the after chemo nausea and the check congestion. Her blood counts were just high enough to let her have chemo but she had to go back the next day for the shot to force her bone marrow to start producing.

Sarah had gone to the neurosurgeon the day before she left for CA to get her checkup and results from the MRI.

No sign of brain damage and even the scar tissue from the surgery had healed to a point it was almost non-existent!!
YEAH!!!!!

Still has to take the radiation treatments when chemo is over and hopefully the ptscan on her body after chemo will show her body to cancer free as well! Let's hope!

Thank you to all who have prayed and supported us through this. I know those prayers had a LOT to do with this miracle! We were told the chemo would not work on the brain tumor, only on the body, yet the brain tumor is now gone! Only the power of prayer could have worked this miracle and I thank all of you from the bottom of my heart!

It took me awhile to get around to putting this latest update on the page. Lots of non cancer things going on that took up a lot of my time and thought. I've had lots of time to spend with Sarah, talking with her and I realize how much she's changed because of her experience with cancer. She's more grownup, more thoughtful and has a perspective on life that few her age have. I like this new Sarah, a lot.

First, last Monday was Sarah's VERY LAST CHEMO!! YEAH!!! It was the worst one to date and we are all thankful as I think we'd have to drag her kicking and screaming back for another one. :) We ask her this week how she feels, and her response is "no different". Wait honey, until next week when you don't have to go back and actually get to feel better each day. So far, you've gone through a 6 month schedule of hit hard with chemo, and two weeks to recuperate so you're strong enough for the next one. You're probably thinking you're supposed to feel this way by now.

Sarah has the next couple of weeks off, until her next doctor appt, when her petscan will be scheduled to make sure all the cancer is gone. They'll also schedule her radiation treatments at that time. She's a bit nervous about the radiation.

As I've stated before, Sarah's father had a major stroke awhile back. The kids are working like demons trying to find adequate care for him now that he is out of the hospital. Because he isn't of a retirement age, it's more difficult finding funding for a rehab center and he needs more care than being home by himself is possible. It's tough on the kids and the majority of the responsibility falls on my son, as both girls live an hour away and have other problems/family that consume a lot of their time and energy. There were some well meaning friends and family that caused a lot more grief for the kids than help. I worried a lot that my family would fall apart through this, I still worry a LOT about my son who is shouldering most of the financial, mental and physical burden of taking care of his father. It bothers me most that those who professed to be his help and friends, created so much grief for him that they had to leave. They could have been so much help to him, helping him to find the funding, etc needed, but they choose not to do so.

I know from my own personal experience with Sarah that this is a full time job, finding health care, funding and assistance. You don't have a whole lot of time and energy left over for taking care of things you need to do, like go to work or deal with family squabbles. You NEED someone to back you up, to take some of the burden off, not someone to create more. So now he's on his own and I wish that I could be of more help, but I can't. I worry about if he'll be able to support himself while he forks over the $600 a month in prescription copays for his dad's medication. I worry that he won't be able to support himself when he has to miss so much work to take care of his dad, spend days at the social security office and other "assistance' programs, only to be told, sorry, no can do. I worry that he is taking on too much, but he can do no less.

Why is it that this country makes taking care of our loved ones in such situations so difficult? That even with insurance, the cost of health care is more than the average person can bear? That without insurance, the situation is nearly hopeless?

I have a dear friend, Christina Hall, who has been very supportive during all this. She has cancer too. Her husband has insurance, but the copays, etc are so high each month, they can't make ends meet. Example. Sarah's copay for a treatment or dr visit is $30 a visit. Sounds great, doesn't it? But remember, cancer isn't an occasional thing. You don't get to go just when you don't feel good. There are weekly visits, sometimes daily visits and those copays can easily add up to several hundred dollars a month, EVERY SINGLE MONTH OF THE YEAR! That doesn't even figure in prescription costs, special devices costs and the cost of getting back and forth to those treatments and visits. Imagine taking on a $350-500 a month car payment when you can't afford to make the payments and are barely making ends meet as it is. Or an extra house payment, every month? My friend is suffering from severe depression, fear over losing her home, her life, the daily struggle to keep working despite the pain, the illnesses, the depression and hopelessness trying help her husband pay the endless and never ending bills. For awhile, she was helping pay bills by sewing doll clothes for sale, but the pain has gotten so bad, she can no longer do even that.

This dear person applied for assistance but was turned down because her husband makes a measly $300 a month too much money. Now, that's only $300 above the poverty level which is $12,000 a year. No one can pay for cancer treatments, even with insurance when they are that close the to poverty level. Heck, at that pay, one can barely keep a roof over their head and food on the table. Just paying the insurance premiums is more than this budget can afford. Yet, they can not afford to drop it, or Christina becomes uninsurable and loses access to the life saving health care that she needs. So...... what? Is she supposed to choose between life saving treatment and medications or food? It's a SIN and our government should be ashamed of putting such a large population at risk this way.

I'm very afraid for Christina, that she has lost hope, feels abandoned by a system that by law, must offer FREE health care to immigrants, but feels no such obligation to help it's own citizens. I fear that Christina is just going to give up and then we'll lose her.

If you would like to help Christina, give her some hope so that she can continue to fight her battle with cancer, please donate any amount you choose through paypal.

My hubby is a very politically aware person and constantly has this or that report, news, etc on the television. This past week, I overheard a republican politician state that people who are inadequately or not covered by health insurance are either too cheap to pay for it or too lazy to go to work to get it. HELLO!!!!! Damn, but I was in the other room and though I raced in to the TV, hubby had already switched stations to see what was being debated on another channel, so I didn't get to find out who that damned moron was. Is this the republican stand on health care? If so, guess I'm voting Democrat because health care seems to be on THEIR priority list.

People should not be forced to give up their lives permanently in order to feed themselves now, or to pay rent to have a place to live out what lives they have left. It's just plain murder in my opinion to have an "I don't care" attitude about this, and thus condemning these people to a slow death.

My daughter was saved through the generosity, prayers and loving support of a huge community of people who I am honored to count as my friends. But she came VERY close to being one of the death toll as a result of the national health care system or lack of it. Since Sarah has been sick, I have discovered that nearly everyone I know has been touched by cancer in some way. A loved family member or friend, or they themselves have fought their own battle to stay alive.

I repeat my former statements that it is SHAMEFUL that these people have to deal with the fight to keep bills paid, to find health care, to keep food on the table and a roof over their head while they are also dealing with their own personal fight with death and the debilitating effects of treatment.

Please. Write letters to congressmen, to senators, to the president or anyone else you think might listen. Send them to my site if you need to hammer home the personal fight of Sarah. I initially just needed an outlet to talk about what we were going through. I hope now that this page can also serve as an example of what we are putting our citizens through and how devastating a catastrophic illness can be. When a tornado, hurricane or earthquake rips apart our community, disaster relief is available. This natural disaster (cancer) is ripping through the community of our entire nation and there is no disaster relief for the victims in site despite the HUGE potential death toll.

Such a blow tonight. Sarah had her CTScan yesterday and her Petscan this morning. Will see the radiation doctor Thursday. But PLEASE Pray again! Dr. Loukas, her Oncologist, called her this evening. The CTScan came back with all previous cancer GONE! BUT!!! Now one of her ovaries is lighting up on the scan. She's devastated. I had hoped and prayed that all this fear was finally over. Pray that it is just a benign cyst! I can't even write anymore tonight, I'm so upset.

Sarah had all her tests this week and we met with the radiation doctor. Have to wait for the results now. I'm feeling really low though. I think she has decided to not do the radiation and let God decide her fate. Because the doctor told her she might lose all her hair and be permanently bald. Maybe. Because he couldn't guarantee the cancer would not come back. Because she might have to deal with nausea again. Because she might have serious memory problems afterwards. Because it could cause brain damage. She says she'd rather die happy with what hair she has left, then live 50 more years miserable because she's bald, or can't remember where she parked her car. She SAYS she has not made up her mind yet, but I think she really has. And she said that there's no guarantee the cancer won't come back so she wouldn't be any better off taking the radiation and the risks involved. I don't know. I don't want to live in fear the rest for her or my life, worrying that the cancer will come back because there may be cancer cells lurking still in her brain. I don't want to put on her tombstone "but she died with her hair!" She already told me if the cancer comes back, she'll refuse treatment. But it's her decision to make, not mine. She said that if the lighted up area on her ovary comes back cancer, she's going to say screw it. She's going to live out what life she has happy and not spend it sick from treatment. She's tired of hospitals, tired of doctors, tired of needles, tired of treatment. She has no life so what is she giving up? It depresses me to hear her talk like this. But at the same time, I completely understand. If there is no hope of a life without cancer, is it worth putting yourself through this hell? What joy of life is there in being too tired to do anything, vomiting, being poked and prodded and stuck with needles all the time. Giving up all your time for doctors and tests and making what time you do have unavailable because you're just too sick or tired to do anything? It's just that selfish part of me that wants her to keep fighting and never give up because *I* need her. It's my battle now to find peace and acceptance with whatever decision she makes. I don't do well when I feel this helpless to change or alter the course of events. I don't do well accepting defeat when the chances and possibility of winning forever are so close. So forgive my rant, my pain, my fears, my anger.

Sarah's ultrasound came back with GREAT results! It IS just a cyst and the doctor said not to worry, it should go away on it's own. I thought this might be it as we have a history of such in our family. Sarah seems to be feeling better about things. I think the weekend away really did her a ton of good. Hopefully reminded her of the life she wanted so badly to fight for when all this started. I completely understand her point of view. But it seems like she fought so hard for so long. To get through high school and then through cosmetology school despite being learning disabled. To pass the state exam to get her license WITHOUT the extra time, etc that she qualified for as LD. To get through her surgery, the long months of chemo. To give up now....sigh. Let's keep our fingers crossed.

Keeping the puppy was a joy. I have loved this little girl since the first time Sarah gave me this tiny critter to hold. I have always felt that she gave Sarah lots of comfort and love when Sarah really needed it. I have always heard that Chihuahua's were mean little dogs but this is a very loving and responsive dog. I can tell that she was raised while Sarah was going through chemo but also that she was raised with a ton of love as well. When Sarah dropped her off, she brought over more stuff that my oldest brought over when I kept the kids as babies. Besides her dog food(both dry and canned), treats (two kinds), bowls and leash, there was a bag FULL of toys, a "going to grandmas" bag with her adorable little pink sweatshirt (in case she gets cold, Sarah said) and her purple t-shirt (just cause she looks so cute in it). There was a list of emergency numbers, her favorite blanket (which is a full size human quilt that smelled beautiful, not like a dog at all) doggie shampoo (in case she got stinky), chewy bones, and her tub to sleep in. Sarah even called regularly to check on her and to "talk" to her on the phone. She said she often calls home and talks to her on the answering machine.

Noel is extremely observant to her keeper's moods. She knew exactly when I didn't feel like playing and was content to play by herself or be quiet in her box. Even if she REALLY REALLY wanted to play, if I laid down, she was content to play by herself and every once in awhile, dropping herself down to lay out next to me to offer me comfort and an occasional sweet but icky "kiss". When she saw me up and about and it looked like I was "up" to playing, she immediately dragged out her toys and demanded that I play with her. The few times I told her no, she looked disappointed but played by herself. As long as she had her own toys to play with, I had no problems with her wanting to chew up anything of mine, not a single shoe or rug or my own toys I had left on the floor. The one time she had an accident, I put her in the corner as I had been instructed by Sarah and she actually sat there for several moments until I let her up. And then there were no more accidents. She was playful and very "puppy" like, yet she was never willing to venture very far from me. Sarah had told me that she was used to being stuck in her box for a lot for the day or two after chemo and that Noel would sleep a lot when Sarah was sleeping a lot. I guess because Sarah always made it up to her when she was feeling better, Noel was content to wait. Though Noel decidedly did NOT like my hubby and had to stay in the box when he was home because she barked and got so upset about him being in the house. He had never been here all the other times she had been over with Sarah and I think she was not convinced that he belonged here. :)

When I opened the door to let Sarah in last night when she came to pick up Noel, I'm not sure who was gladder to see who, but I know Noel nearly killed herself running to "mama" and "mama" was nearly in tears to see her baby.

I can see very much why studies have shown that pets are very therapeutic to the elderly and the ill. I've had less consideration and demands from humans than I got from this tiny bundle of love and energy. I can't imagine a better source of comfort for Sarah the last few months. No matter how tired, how sick, how bald, she always knew she had unconditional love from this puppy.

Sarah decided to go to Radiation and was told there would be 20 treatments in all. At this time, she has 7 treatments left. She decided that she had too much to lose to give up before she was finished. However, the radiation completely saps her strength and her hair did finally give up the ghost and fell completely out. After a couple of days crying, being depressed and refusing to go back to treatment, I talked her into going to her regular doctor and get treated for the depression. She wouldn't get out of bed, she wouldn't cook, nothing....Depression does that to a person, saps you of all energy and will to do even the basics every day. The radiation doctor was sweet as pie and told her to take a few days off and come back the following Monday for treatment.

I have to tell you. She looks RADIANT! I have not seen her look this beautiful in months. She said once she got over feeling blue about her hair, she was free of the stress of trying to hold on to it. She's now free to wear her favorite caps, her wigs, just to let it all hang out if she wants to. We were all surprised to see how faint her surgery scars are now. They really looked horrible after her surgery, Frankenstein's monster had prettier stitching. Now the scar is a tiny pink line barely noticeable.

I don't know if it's being bald, or just to see her smiling again that makes her so beautiful. So many have always told me that Sarah had a smile that lit up a room, it was just something you noticed, that made you feel good and light hearted. Even our priest commented on Sarah's smile the first time he met her. I know you see her photos above and how lovely she is, but they do not come close to showing the sparkle in her when she smiles. I had not realized how much I had missed that smile until I saw it again this week. I don't think anything, not even being bald, can snuff out the light that that smile sends out. She says she finally feels like getting up again in the morning and doing things. She doesn't mind treatments anymore or even being bald. She called me so excited the other morning that she had awakened with a smile on her face. The girl just glows with loveliness.

I should have insisted earlier that she get some help. She had gone to support group but felt they were too negative for her so didn't go back. She had a lot of stress over a prolonged period of time. Depression was inevitable. There was no reason for her to have had to suffer the way that she has when she already had so much on her plate to deal with. It makes MY heart much lighter as well.

Sarah is determined to have that portacath removed asap so I took her in this week to visit the surgeon. Though she can now drive herself, she has a very limited amount of energy after radiation so was very realistic in letting me know she needed a ride.

She goes back to see her cancer doctor on the 16th and has the portacath removed on the 17th. Dr. Ross asked her if they were through with it. Uh...probably not, but SARAH is through with it. She does not allow anyone to use it for tests or blood work because she's developed such a mental block about it that she throws up just thinking about them using it. It's the heparin they use to wash it out with that makes her so sick. She says that the nurses and doctors will just have to not be lazy and stick her in the arm like they do with everyone else!

Well It's been two months since Sarah finished up all her treatments. She remains on the antidepressants because they help so much. She's gone back to work part time trying to make some money, rebuild her life. She had her two month petscan and her two month CTScan this past month. Both came back clear and CANCER FREE! YEAH!

Each time the tests come back clear, we feel a little bit more secure that she's beat this thing for good, that a normal life and a family are actually something she can plan for her future.

Her hair is starting to grow back and she's a bit upset that it's looking DARK...of course it's still stubble but she says "I don't think I'm going to be a redhead anymore." Well....that could change, we were told that when it first grew back, it could be a different color and texture, but sometimes it goes back to normal. Let's hope. It's hard to imagine Sarah as anything but a redhead.

It's been a long time since I reported anything on Sarah and I know there are many that still come to the page to check and see how she is doing.

Very well. She just went in last month to get her regular MRI's, and other tests and met with both her oncologist and neurosurgeon to review the results. She continues to be free of cancer and there is still no sign of the brain tumor coming back. YEAH!!!

Sarah is back working a couple of days a week at a local beauty salon. She still receives Social Security Disability and will until she is ready to get back to work full time again. She'll continue to receive it for awhile then, until they are sure that she can handle it or in case she gets sick again. She says she still feels weaker than she did before the cancer but is enjoying the opportunity to rebuild her skills in cosmetology and her stamina to be able to stay on her feet all day, as well as rebuild her confidence in herself and her skills.

Her hair continues to grow back and it's wonderfully kinky. :) Brown with some red thrown in here and there. She's hilarious. Wouldn't let me touch it because she keeps it so heavily gelled to control it. But cute as a button. I'm trying to get photos of her so you can see but we haven't done it yet. We've been told that over time, it will revert back to it's original color and texture. Still, strange to see her with such curly hair.

It's strange, but when she was bald, people were very sensitive to her and about her hair, but after it started growing back, she started getting a lot of flack from people about her punk look and whether she was a girl or a boy and why would she buzz her hair like that? Sarah found herself a lot more comfortable going bald than wearing a wig or hat and only covers her head when it's cold, so I guess people just assume that her hair was shaved off by choice. Kind of funny after all the fuss over losing her hair, eh? LOL! But she deals with the insensitive people with graciousness, gently letting them know her hair is not by choice, but because she is a cancer patient. They feel like crap after, but then, my opinion is that they kind of deserve it for being so bold as to make comments about it. Maybe it's just because I'm her mom that I feel that way but I can't help it. I'm kind of protective of my kids so I don't apologize for how I feel. She doesn't seem to be offended by it and that's what is matters. I'd have to go kick some butt though if it made her cry.

I guess she is a lot more grown up now than I am. :) Or maybe losing your hair and finding out that you are still beautiful, people still love you and your hair has nothing to do with it is a truly life altering experience and gives you confidence that it's not your looks that are important, but who you are inside that matters to other people. A lesson we could all use I'm sure, but a hard way to learn it all the same. I for one, kind of envy her that confidence and sure knowledge, because I see in an additional beauty now in her face that I believe is simply a reflection and result of that knowledge. And she was already beautiful to start with.

Happy News!!! Sarah continues to be Cancer free and is now expecting her first child, due on Jan. 15, 2006!

More Happy News!!! Sarah found out this morning that she is expecting a little girl!! Yeah!!!

Sarah is doing great, a radiant pregnant woman!!! Doctor says he thinks she's further along that they think so maybe she'll make it to her due date, maybe not. Her cancer doctor is planning a complete checkup with all the tests after little Presley Faith is born. He doesn't think anything is going on, but since she could not have any dyes injected during her pregnancy, doc says it's overdue and needs to be done. She's busy planning the nursery with pink walls and cute red and black ladybug decorations.

My sister was here visiting this past week and took photos. Sarah and I goofed off for the camera and showed off her big belly! LOL!

Introducing Preslie Faith Juranek, weighing in at 8 pounds 12 ounces, 20 in. long, dark curly hair and her momma's beautiful eyes!

Sarah with her new shorter do and her "baby" Noel, now about 13 weeks old. Sarah had to give up her previous dog because he was too big for her to take care of, keep groomed, etc after surgery when she was so fragile. She missed him so much that Michael brought home the tiny Chihuahua puppy a couple weeks later. They adore each other and spoil each other rotten.

Pink

Is for the color.

Pink is for the love.

Pink is for the feeling you have for love.

Pink is my color for the love I give my Family.

But it is mostly for my cousin Sarah.

Pink is for Sarah.

Sarah

by:

Heather Lea Harper

(Pink is Sarah's Favorite Color)

SARAH

Smart, young, beautiful girl.

Has a mind of her own.

She has a wonderful family that is there when life bites you in the rear end.

And is even stronger than ever.

She is the one and only that I know that has beautiful red hair.

Her hair is pretty as her smile but she is much more beautiful than any thing I have.

She is luck to have a nice family be there by her side.

MY COUSIN

by:

Heather Lea Harper

Sarah

Strong and happy

As deeply in love with her new husband

Right going beautiful hair

Amazing person

Heaven is watching closely

by:

Heather Lea Harper

Many in the doll community have come to Sarah's rescue through prayer and donations and continue to help us raise money to help cover Sarah's expenses. We have been refused financial help over and over, so every dollar helps. We are hoping now that there is a definite diagnosis of cancer that will change and will be busy the next week trying to get that help.

Direct donations may be made to me through Paypal as Sarah and Michael do not have internet access:

Many are running auctions for Sarah or donating part of their doll sales for Sarah's medical funds. I will try to keep of list of these people here if they notify me of their items, this is by no means a complete list as there are many who have not notified me of their sales:

Please look for auctions on eBay with keywords "4Sarah" or "charity +Sarah" in the title or description. We have designated these for the keyword search in order to help people find the auctions!

If you are local to us and would like to help organize a local benefit event, please contact me at pamela@pbdesigns.biz.

Thank you to all who donated! Sarah has gotten her wig now and a few caps and scarves to see her through. Thank you so much for your generosity!

Please say many prayers as well. Each donation and prayer is badly needed and very much appreciated. Thank you for all your help, your support, you prayers.