New Year Update

I wanted to update those of you who check in to see how we are doing. The holidays really weren't too terrible. There were tears and sadness, but we were able to enjoy our day together. It is still possible to break down at the slightest thought, though. That probably won't change for awhile.

I know that there was one person who expressed the desire to know what was done with the Memorial Fund. However, true to form, I can't put my hands on their info to let them know. Until then, and for the rest of you, this is what the funds were used for. Some of the money was used for the memorial tree at Bethel College. Money was donated for scholarships at Memorial High School in Ashli's name. We will be purchasing several bookcases to be used on the Elkhart General Oncology floor for a patient library and some materials to add to the collection of books, videos, dvds, cds, etc.

Finally, we would like to plan a date for those who would like to remember Ashli together in June or July to go to Chicago for an overnighter (or just the day). Many of you really have not heard each other's Ashli stories because you have never really met. We will all be sad at that time, but we would like to share the grief and love in a location and manner that is thoroughly Ashli: shopping in Chicago! If you would like to come and would like to help narrow down the date, please let us know.

We know that many of you continue to remember us in your thoughts and prayers and we thank God for that.

Our love,
the Heplers

Bethel College Tree Planting

Here is the latest from Kelly, who is coordinating the Tree Planting at Bethel this weekend. . .
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I wanted to let you all know that the time of the ceremony was changed to 1:30 pm (to accommodate some very special people).

As for the location of the tree - the directions I got from the Bethel groundskeeper are as follows:

" it will be near the new helm, on the south side of the radius, southwest of the flag-pole, near the road to Oakwood."

I'm sure we'll be able to figure that out :)

Looking forward to seeing you all! Please email me at curtnkellymoses@aol.com or call 810-434-1162 with any questions.

Kelly <><

Bethel Tree Planting Ceremony

Here is the most recent info from Kelly on the tree planting at Bethel which will be in a few weeks. . .
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I just heard from the groundskeeper at Bethel and everything is good to go for Ashli's tree :) They have zero issues with the plaque and are going to install it for us (huge relief)

The tree will be planted near the new boulevard entrance and the new helm. (just wasn't enough room near Brennamen).

In case you aren't aware of how to contribute, the tree and plaque will initially be paid for with money from the memorial fund set up for Ashli.

Please send any donations (to cover the cost of the tree, planting, and plaque) to:

Lake City Bank
Attention: Ashli Hepler Memorial Fund
202 W. Market St.
Nappanee, IN. 46550
Tel: 574-773-5553

I'll email everyone the week before the ceremony with exact times and locations.

By the way, we'd like to have a time of "sharing." So, if you have an Ashli story that you'd like to share, you'll have that chance. The overwhelming response is that everyone wants this to be a CELEBRATION of Ashli's life. I'm sure anyone would be hard-pressed to think of a time with Ashli during our Bethel days that didn't involve laughter, random inappropriateness, and humor; let's remember her that way!

Once again, please feel free to forward this to anyone you think might like to be involved.

Can't wait to see you all!

Kelly Moses <><

I wanted to give you all further information on some of the great things that are happening in spite of the pain of our loss of Ashli's bright spirit. Alysia already updated you on some of them, but I am attaching some further information

This is from the South Bend Tribune:
Chargers honor Hepler

Ashli Hepler was a special person in the Memorial program.

The Chargers are making sure they remember their friend.

Memorial honored Hepler, who died June 20 from cancer, at their home match Sept. 11. The Chargers presented the Spirit of Ashli Helper Recognition Award to Paige Robison, a seventh grader at West Side Middle School.

"Ashli just had a huge impact on our program and our school,'' said Rost. "She affected a lot of kids. She just loved being around the girls and the sport.

"The award symbolizes what she meant to our program; love for team, selflessness, enthusiasm and passion.''

Hepler, who was an English teacher at Memorial, was just 33 at the time of her death. The award to honor her will be given annually to a participant in Memorial's elite summer camp and a plaque will be displayed in the volleyball trophy case at the school.

And an update on the tree planting at Bethel from Kelly Moses:

I'm in the process of finalizing the details for the plaque for Ashli's tree.

It will say something along the lines of the following,

This tree has been planted in Memory of

Ashli C. Hepler (Class of 98’)

1974-2007

and in Honor of the friendships made here,

at Bethel College.

"Because I knew you: I have been changed for good"

Also, Danna Jacques is taking care of the tree details. We're going to see about getting a "Chinaberry" tree (it's mentioned a few times in "To Kill a Mockingbird").

---

And finally, the details are to be finalized, but there will be two ongoing scholarships for Memorial High School students in Ashli's name.

Thanks for your love and support.

Perri

Faithful Few

For the Faithful Few who are still reading~



I'm sure you'll be surprised (some of you elated) to see a new blog on here. It makes me laugh b/c I can see Ashli rolling her eyes that some of you will be sooooo excited that there is something new for you to read!!! There are a few things I want to make sure you know about:



1) On Tuesday this coming week, Jacquie w/ EMHS volleyball team will be giving a spirit award out to a volleyball player between the JV & Varisty games. Most of you know the volleyball team was something Ashli cared a great deal about. Most of our family will be going to watch and support the team and we welcome all of you to come who are available and would like to be there.



2) Kelly Moses (Crocker) is working on getting approval to plant a tree in Ashli's memory @ Bethel. I "think" the plan is to have people just donate to the memorial fund we set up for Ashli and we will pay for the tree & plaque with the donations we get towards it. I'm not sure if Kelly has gotten this approved w/ Bethel yet, but she's hoping to do some sort of planting ceremony over Bethel's Homecoming which is towards mid-late October. So for those of you who want to donate or if you want more specifics get in touch with Kelly. If you don't know how you can email me and I'll forward it along or you can just post something letting me know w/ your email Kelly will swing by and check.



3) Mom mentioned that she would like to plan a Chicago trip next spring (probably sometime in June) for friends of Ashli's (probably guys will be left out, but we haven't decided for sure). The thought was to carpool a bunch of us to Chicago, eat at Cheesecake Factory, shop, mayb catch a show? & just share happy memories of Ashli. I think it will be a really fun time. We figure if some people want to spend the night we can share rooms and if others don't they can just do the day trip thing. At some point we'll choose some dates and blog the ones we're considering. But we wanted to give you plenty of advance notice, so if you think you might want to go, keep it in mind.



4) Our Grandma is working on a book about Ashli's life. One idea we had for the book was at the beginning of each chapter or in different places throughout the book to have little memories from some of her friends. If you have a funny, sentimental or happy memory you'd like to share, you can email my Grandma at: Leakeys@aol.com



I think about many of you often. There is not a day that passes that I don't think about Ashli. Some days I smile at a funny photo I come across. Other days the dumbest, most piddly thing that reminds me of her brings me to tears. It's comforting knowing there are others feeling the same things & it's nice seeing that people are still commenting.



Love,



----Alysia

Gone Home

Most of you know by now, but Ashli passed away last night. It's been a whirlwind of activity and we just want to say thank you to the countless individuals who have faithfully prayed for Ashli, lifted her spirits with visits, cards and phone calls, emails and all the fun things you've done to cheer her up.

The arrangements are as follows:

Viewing: This Saturday @ St Mark from 10-2 pm
Service: 2 pm also @ St Mark

A massive thanks to all of you who have been helping out so much the last day or two. You have been a huge help by bringing by food, taking over duties we simply can't tackle right now, and just "being there" to remind us of the good times, make us smile and laugh and pray with us. We know Ashli loved all of you dearly and we love you too.

So Ashli has gone home. We'll miss her, we'll grieve her. Let's be honest. . .there will be a LOT less adventure and humor in the world now that she's gone! ; )

And to Ashli: Thank you for the wittiness, sarcasm & humor you brought to all of our lives. Your courage and bravery were an inspiration to us all. We miss you. We love you.

--Alysia

REM Cycle

Being bedridden is certainly taking its toll. Virually every night I dream I'm up and about and doig something. Often I wake up trying to get out of bed or holding out a glass because it is time for a refill as my amazing friends have taking me to Houlihan's for dinner.

The REM Cycle is amazing. It takes so long for you to realize that it is not your reality. It's all a dream. I've decided I want to pack my bags and just move in to my REM Cycle. Is that bad?

On a more serious note. I have a pretty bad cough with congestion. The doctors have tried a couple meds but nothig seems to be helping and the cough intensifies my pain :(

Your prayers are both needed and appreciated!

Visiting Hours

Hi Everyone~

Thanks so much to all of you who have taken the time to call, drop by or offer to send meals for Ashli, Anne & Joel. The love and support you are showing is just AWESOME!!!

We have just one small request. . .for those of you who want to come visit Ashli, we welcome and encourage you to do that!!! But if you could please call the home phone and leave a message for Anne or Joel letting them know who you are, when you are planning on coming & how they can reach you it would be great!

Ashli has been texting with some people to make arrangements for them to come and visit. . .which is also fine, but sometimes she forgets to tell Anne & Joel and then we have several groups of people showing up at once. If you have been in her bedroom, you know why that's a problem. . .there just is not much room in there! =) Plus, we want to be sensitive and know that your time with Ashli is precious and special & we don't want you to have to "share" her when you are there unless you are coming as a group intentionally.

We thank you so much for your prayers and support we cannot begin to tell you what it means to be uplifted in prayer as a family.

Keep the prayers & visits coming!

Love,

Alysia

Ain't No Title Without Any Real Writing Direction

It's been so long since I've written that I have no clue what I even need to say. I am back at home and set up with Hospice which means that my bedroom now looks strikingly similar to a hospital suite. The majority of my visitors are RN's. Babette asked her amazing friend Debbie to help out and she has been nothing short of a godsend. Anne and Joel have stepped up and become my primary care takers. It is rather humbling to realize that there are people who are willing to put their own lives on hold for the sake of yours. In an earlier blog Alysia mentioned that I have been losing some movement in my legs accompanied by lower back pain. It got painful enough that Dr. Jin ordered an MRI. I wasn't even worried about it because I didn't think anything else could go wrong. Much to my chagrin I learned that the tumor had spread to my spine which in turn caused compound fractures of my vertebrae. Obviously there was some explaination for all my back pain and my lack of ability to move.

As you all continue to pray, please pray for my spirits as well as my physical well-being. I am beginning to feel like I can't catch a single break in this uphill battle and as you can imagine that makes it hard to continue putting all your time, effort and energy into fighting. I think I can only thank God that I have amazing family, friends and supporters who are walking beside me on this difficult journey.

My love to all of you

Update

Ashli wanted me to give another update.

We found out she will not be resuming further treatment in Chicago. They felt it was counter-productive because it was not really helping control her pain like they wanted/expected it to. At times it seemed like it was making her "feel" worse rather than help her.

They are in the process of setting her up with hospice. This will be beneficial b/c "hopefully" that will mean that she won't have to be traipsing back and forth from home to hospital as often. They can set her up with a hospital bed etc at home and all that and it will be a lot more convenient for her and comfortable for her.

They would like to get everything set up at home for Ashli yet this weekend. If anyone is able to help today or tomorrow with moving furniture etc setting up, I know we can use the extra hands. You can call Ashli's home phone number and leave a message where you can be reached and either Joel or one of my parents will get back with you on when they will be doing things today and tomorrow. Thanks for your help and prayers!

--Alysia

Another Update

Hi All,

I heard people have been calling. It's been a very busy and trying few weeks. Ashli wanted to blog herself, so that's why we were waiting to update you. . .but I will give you a brief update and she can go into detail later when she has time.

Ashli's doctors at Chicago have decided to stop her treatments for now. They think it was perhaps hindering more than helping. Obviously this means anyone who was supposed to drop off or pickup, you are off the hook for now! =)

For the last few weeks she has been having some serious problems with her back. Last week it all culminated in a trip to the ER b/c she was having problems feeling her legs. They ran some tests at the ER and everything came back "normal". But she is basically paralyzed from the waist down right now. The nurse at the ER couldn't tell us if this was related to the tumor or if the back/leg thing is semi-unrelated and 'may' go away if her back gets better.

Please pray for relief for Ashli's back. The spasms are very painful for her and the immobility is very hard for Anne & Joel since they are the ones primarily helping her now that they are moved in.

Thanks!

--Alysia

G-Tube In!!!

The G-Tube is IN PLACE!!! Thanks! Your prayers must have made the difference this time around! =)

--Alysia

Update

Hey all,

It's Alysia, Just logging in to give an update. As most of you know, last week, Elkhart General tried to put a G-Tube in for Ashli. . .TWICE to no avail. Apparently, her bowel is blocking one opening the tube needs to come through and her rib is a little low and is blocking the other opening. Ashli was released from Elkhart last Friday afternoon. By Sunday when I took her to Chicago, she was in sorry shape. So they were not allowing her to have her chemo/radiation yet. On Tuesday morning Chicago took a 'stab' at trying to put the G-Tube in. They could not get it in either. This afternoon they are trying ONE MORE TIME to put the Tube in. This is a HUGE area for prayer today. There are other ways for Ash to get nutrition, but there are more risks of infection with those other methods and it's harder on her body. Today they are going to try to SURGICALLY put it in. (Rather than just go through her mouth etc). Please pray that things will go well and that her body will recoop from surgery.

Also, if people are willing to stay with Ashli while she is in Chicago, I know she appreciates it. After being there with her for a few days, I now understand completely why she doesn't want to be there alone. It's hard to get the nurses to come when you need them. I don't think this is a testament to their skill, just that they are grossly understaffed in oncology. But regardless, it does affect the type of care she receives.

For those of you who signed up for pickup/dropoff for Ash, we are now just going to fly by the seat of our pants on that. We have no idea if they will keep her and have her treated next week or if she will be released and have to wait yet ANOTHER week for her third round. If that is the case, she will be almost a month behind on her treatments. =(

So obviously this is another area of prayer. . .that they can find a way to keep her HEALTHY on her off weeks so that her body is ready for her next round of treatments.

Thanks for your continued prayers. If anyone is willing to maybe take a few days out of their schedule to stay with Ashli in Chicago please email me or call Ashli's home phone and leave a message. I believe I posted my email in a prior message. Thanks!

--Alysia

One more quick thing

In Anne's excitement to tell you all the funny dreams Ashli's been having she forgot to ask if anyone was available to go stay for a portion of next week (end part) w/ Ash in Chicago. Ashli hates being in Chicago alone.

I am going to drive her up on Sunday and stay through Tuesday afternoon. So if someone happens to be free either maybe Wed & Thurs or Thurs & Fri, then drop me an email or call Ashli's HOME phone and leave a message for her on the machine. Now that Anne & Joel are moved in, they will get the message and can help make arrangements and give driving directions.

toryalysia@yahoo.com

Thanks~

--Alysia

Same old Ashli a few new tricks

Hi everyone! This is Anne the invisible sister because to those of you that have not met me I have only been known in theory. I was sitting with Ashli at the Elkhart General Hospital and thought I would update you all on what's going on with her. We came to the hospital on Mondy, April 3oth because Ashli was having alot of chest congestion. They decided she had a slight case of pnemonia which they have been taking care of. They also decided they wanted her to go to Chicago to get a feeding tube on this Thursday. Then they decided not (so for those of you who thought she was going it's off now.) As of today, the plan is she will be coming home on Friday, then return to Chicago for her next round of chemo and radiation.

So, now that you are all caught up on the information, I have a few funny Ashli stories for you. As many of you know, Ashli has been on some pretty strong pain meds one of which cause her to come in and out of sleep and have some very vivid dreams. First story, Ashli had a couple of visitors here and they were having a nice serious conversation when she dozed off. When she came to she said "I want another sandwhich." Turns out she was dreaming about an Arby's beef and cheddar. Second story, a couple of days ago she fell asleep with a box of kleenex beside her, she proceeded to pick it up and start tearing the box open. When she came to she said she was dreaming she was opening a box of ice cream bars. There are many more funny stories but I thought you would like to know that as we all know, Ashli is a very funny person, but dilaudid makes her funnier.

A Difficult Quandry

I have not blogged much about Corlissa lately. Things have been a little difficult between the two of us. Those of you who know her well, know that she is pretty scared about everything that's going on with me. This has translated into an increasing distance between the two of us. On Tuesday night, one of my worst fears was realized: she is moving out of my house. It is hard to know whether this is for the best or whether to fight it tooth and nail. Everyone keeps telling me that I need to focus on my health and while I know that is true, it is easier said than done.

Please keep both of us in your prayers as we make decisions about the directions of our lives. As you can imagine, this is very confusing...well, off to radiation! What a crazy time this is.........

Oops... I forgot

Oops... I forgot to give you my vitals (can you tell I've been in the hospital for too long?

Bernard Mitchell Hospital
Room TN623
5815 S. Maryland Ave.
Chicago, IL 60637

*this is the hospital that has restrictions on fresh flowers and latex balloons. This is common on many oncology floors as chemo patients have a greater tendency to have reactions to flowers, plants, and latex.

Back in the Saddle Again

Alrighty... I am officially settled back in the saddle in Chicago. Okay, not quite a saddle... more like a trend-setting device that allows me to raise the head or foot of my bed with just one touch of a button. And this time I am really settled. I've decided to make my saddle more comfortable by suiting it with some 400 thread count sateen sheets. They keep snapping right off this cheap, crappy mattress, but at least they have been a popular discussion topic with the nurses.

For those of you who don't know, sores in the mouth are one of the main side effects of radiation. They are called mucusitis. They told me this would happen and I signed off that I had read and understood about the side effects of my radiation. This list is deceiving. Rather than listing "mucusitis" as one of the possible short-term effects, they should just write "your mouth and throat will loak and feel like a piece of raw meat." This has honestly been the hardest part of my treatment thus far. These sores make it incredibly difficult to chew and swall. The only releif I get is from a numbing mouthwash. This only alleviates the pain for about a half an hour. Fortunately, Dr. Vokes seemed pretty concerned about this side effect and lowered the dosage of each of my 3 chemotherapy agents.

We also realized that my skin is definitely sensitive to tagaderm, one of the clear dressings they use to keep needles and tubring secured to the skin. I get itchy and my skin will often blister up. We finally found another dressing that seems to work without the allergic reaction. YEAH!

I want to give a huge thanks to those of you who have been helping out by providing rides to and from Chicago and especially to those of you who have taken time of your professional/personal lives to come stay with me in the hospital. It has been an enormous help to alleviate a burden of fear and loneliness. These first few weeks have been quite scary. I am so grateful that I haven't had to "go it alone."

Just keep praying. Everyone keeps asking how they can help. That's the best thing we can all do.

Call Me George

Contrary to what you may have heard, I did not give up blogging for Lent. Beleve it or not, my laptop has been restored to working order. So, I've got this lovely new house with space for a fine office and working office equipment; however, evidently no one in the freaking universe offers DSL service in my area. Connecting throug a modem just seems so pre-historic. My neighborhood butts up against Copperfield which has to be one of the highest per-capita income neighborhoods in Elkhart County. You would think someone would want to tap our gold mine. Come on Verizon. Aren't you always looking to make a quick buck?

Okay I have officially decided that my life is one big Seinfeld episode (only it doesn't seem so funny sometimes). Here's the problem, though: If I were casting my episode, I would want to be Kramer. After all, what does he have to do except show up and be funny (sounds like type-cating to me). Instead, I am evidently stuck playig George in this dang episode. Yes, George is bald, but beieve it or not, I still have my hair (Interesting sidenote: Did you know that if your doctor writes a prescription for a "wig" it is denied by insurance. Insurance companies will only pay for a wig if your doctor prescribes a "full cranial prosthesis").

Why do I feel like George do you ask? Well... let me tell you about my string of bad luck. Cancer. Need I say more? Laptop 1 breaks down. My car breaks down. Corlissa's car breaksdown. Stuck in God-forsaken Rancho Cucamonga all summer. Back from Cali. Feeling better. Definitely skinnier, but can't afford to shop because of the dang cancer. My car breaks down again. Corlissa's car breaks down again. Almost set my small apartment on fire. Laptop 2 breaks down. Kevin fixes laptop 2 (Thank God my friend Jen knows how to pick a husband. Sorry I called you a computer geek in high school, Kevin). More cancer. Stuck in lots of hospital beds. Corlissa's car breaks down again (This time it will cost $1,470 to fix, so we wil definitely not be fixing it). We are now down to 1 car, but... DO NOT FRET! I have now started losing vision in my right eye and can hardly see to drive anyway.

Although I still wish I could just play Kramer, the silver lining is that I've got great friends and family who are the only things making life as George bearable!

Request From Ash

Ashli wanted me to update you all on one more thing. . .

Many of you may not know that our yongest sister, Anne, & her husband Joel have offered to move in with Ashli to help her keep up the house and some day to day tasks etc. They are currently living in Indianapolis while Joel is finishing up his Masters degree.

Some things have fallen through recently, and we need a lot of prayer that God would open doors for them to find jobs up here so that them moving home can become a reality. This is definitely a big need b/c it is getting harder for Ashli to keep up the house on her own and having Anne and Joel move in would be great since Ashli can't keep up the house on her own right now.

A few people suggested I add to this blog what Anne and Joels career interests are, so here they are:

Anne: Anne is a nationally certified pharmacy tech & is looking for something part-time at a hospital. Anne is hoping to work part-time so to be able to help take Ashli to appointments etc.

Joel: Has a bachelors in history and is almost done with his masters in library science. He is looking for something at a university library, or at a public library. He has special interest in archiving. (hence the history major)



Thanks so much for the continued prayers!

--Alysia

Prayer Requests from Ash

Ashli has asked for some very specific prayer.

-Skin irritation: Ashli is already starting to see some redness & have itchiness/burning in the area where she's being treated. Often the radiation can cause severe burning and permanent scarring. She was fortunate that she didn't have this in California, but is feeling dicomfort already, so there is concern re: that this time around.

-Her Port: Her old port was removed last night and the new one put in sucessfully. She said there is a lot of irritation and tenderness near her port area. She would like prayer for relief from that since they are accessing it day and night it can be painful if that doesn't go away.

-Mouth sores: the chemo has some pretty nasty side effects that "can" occur. Mouth sores are one of the common ones which can cause trouble eating and swallowing.

-Tuesday appointments: We found out Ashli has to meet w/ her doctor in Chicago every Tuesday, including her "off" weeks. It will be a scheduling nightmare trying to get her to Chicago every other Tuesday for this, so we have asked the doctors to consider working with Elkhart General and allowing a doctor there to do her appointments and report to her Chicago doctor on her "off" treatment weeks. Please pray for understanding on the part of both doctors that they would allow this to work!

That's all I can remember she told me. Today is hump day, so almost one week is down w/ 7 to go! The count down is on!!!

--Alysia

Adventures of Ashli & Haz-Mat

Some may think that spending all day, every day, in the hospital would be a boring way to pass the time. Those people obviously have never been admitted to the University of Chicago oncology floor.

Ashli's trip started off seemingly well. She and her friend Holly made it to Chicago in rapid-fast time. They even found a parking spot (a good one!) which is pretty much impossible @ U of C. Ashli started chemo on Sunday night and the only small hiccup was that her port wasn't working properly. For those of you who don't know, Ashli had a port put in her chest which has tubing so that they can just stick a needle in to give her whatever she may need, be it chemo, liquid nutrients, or pain meds. Unfortunately, the port hiccup was only a foreshadow of the drama to come.

Monday rolled around, and Ashli's first radiation treatment was scheduled for 11:30 am. Blast from the past: in typical "California" fashion, Ashli wasn't called down to 'in patient waiting' until 12:45 pm. Once there, they had more waiting to do. Thankfully, it seemed they would have the waiting room 'mostly' to themselves. Little did they know that their one, lone waiting-mate was a bit of a loony. The gentleman was on a stretcher and apparently, after a short time he started yelling "Help! Somebody help me! They're trying to kill me!" Truthfully, I'm not sure how long they had to share the same space with this disgruntled patient, but Ashli was not called back for her treatment until 3:20 pm. That's right, nearly 4 hours after her scheduled time. (Now it really is sounding like California isn't it?)

Immediately following her radiation, Ashli was taken to imaging. They wanted to figure out why the port wasn't working properly. Low and behold, the images showed that the plastic tubing inside Ashli's body was all coiled up, so they decided to schedule another operation to remove that port and install a new one on the opposite side of Ashli's body. After all this, Ashli didn't get back to her room until around 6 pm. Oh, and mind you this whole time she's been unhooked from her pain meds & hasn't been able to eat anything!

You would think that is the end of this saga, but alas, it's not. Later that evening Ashli got up to use the restroom. She was coming back and her friend Holly noticed blood on the floor. They both kind of wondered where it was coming from, so they started looking and realized Ashli's IV had come unhooked and blood was gushing out! Now remember, Ashli's had chemo drugs pumped into her body for the last two days. Her blood contains toxic chemicals. So who ya' gonna' call? No, not ghostbusters. . . .HAZ-MAT!!! The hazmat team was called to clean Ashli's room and "detox" it while poor Holly had to wait in the waiting room for three more hours!

Tune in next time for the second edition of Adventures of Ashli & Haz-Mat!

--Alysia

Treatment Underway. . .

Hi Everyone,

Just another update. . .Ashli is in Chicago and started her chemo last night. The bad news is that they are having trouble accessing her port. The GOOD news is that they are more flexible on what pain meds they will allow her to take so she is finally getting some relief from her pain.

The address is: University of Chicago, Mitchell Hospital, 5841 S. Maryland Ave, Chicago, IL 60637-1470. Thanks for your continued prayers!

--Alysia

Quick Update

Hi Everyone,

Just a quick update on Ashli's treatment and then on to some Thank You's that are overdue. . .

Ashli will go to Chicago on Sunday and start chemo Sunday evening. Sometime on Monday will be her first radiation treatment. Please pray for a sense of peace for her and that the treatments don't take too much out of her. It would be nice if she felt like it was HELPING not HURTING her. . .also, the big one is to continue to pray for pain management and that she can keep food down. She's starting having problems with that again, but she only has a few more days to make it through before going to Chicago.

Thank You's

Jacquie & Scott Rost & the memorial kids: Thank you so, SO much for cleaning up Ashli's yard. She has been raving about how 'it looks like a totally different house' thanks to all your hard work. Words cannot express how nice it was to have you coordiante that and do it! We appreciate it so much!

Steph Reed: Thank you for staying with Corlissa while Ashli is in treatment and for offering to do all her drop-offs to Chicago. Honestly, it's such a relief to all of us to know Corlissa will have someone with her and is so nice to know that we won't have to drive to and from Chicago every other week.

Lisa Baker, Jacquie Rost & Erin Hartman: Thank you for also offering to drop off/pickup Ashli at Chicago appointments. Again, it's so nice to have this be something we don't have to worry about!

Babette & Holly: Thank you so, SO much for going to Chicago this week with Ashli. She was so nervous about having to start treatments again & I know she really appreciates having people there with her the first few days.

For everyone else: Thank you for your prayers, your cards of encouragement, phonecalls and visits. It has been nice for Ashli (and our whole family) to be surrounded in support & love by all of Ashli's friends.

--Alysia

Back to Treatment

Ashli asked that I update everyone on the appointments in Chicago this week.

She will begin chemotherapy & re-radiation treatment on 04/08/07 in Chicago. She'll do the chemo & radiation 5 days a week and will rotate 1 week of treatment, 1 week off to rest for a total of 6 "treatment" weeks or 12 "rotation weeks" total.

Her pain is still pretty bad and she's been sleeping a lot. Please continue to pray for pain relief for her as that is one of the hardest things for her to cope with right now.

---Alysia

Still Hospitalized

Hi everyone,

Just thought I should update and let you all know that Ashli is still hospitalized. She is not going to be released today and they are pretty certain she will not be released tomorrow morning. Ashli would specifically like people to pray that the pain meds start working. They have weened her off the morphine pump and have re-introduced her oral pain meds. These don't seem to provide her with nearly the relief she was getting and she has been sleeping a lot.

Thanks again for all your visits, cards, prayers and phone calls. They mean a lot to all of us~

--Alysia

Hopefully more answers soon. . .

I got a call from Ashli today. The doctors in Chicago said that in-light of the new info that the ear biopsy came back cancerous, they see no need to do the full biopsy previously discussed. She will have an appointment sometime next week in Chicago, in which they will discuss the treatment plan they have devised for her.

Just wanted let everyone know that is the latest info. Pray that she continues to get her strength back so that she is prepared for the upcoming treatments they will propose. . .

Thanks for your prayers!

--Alysia

Back in the Hospital Again

So here is the lastest. Ashli is back to throwing everything up. She had her appointment today in Chicago and they did let her come "home" but told her she had to be admitted to Elkhart General to deal with the vomiting issue. There is not a direct phone number to her room so your best bet would be to try her cell.

The hospital address is 600 East Boulevard, Elkhart, IN (I'm not sure the zip)
4th Floor(Oncology)
EGH is much friendlier and there are no restrictions on what she can receive. Plants, balloons whatever are fine. I don't think they really know how long she'll be in. The doctors @ Chicago are meeting again tomorrow to discuss her case. In light of the new info from the ear biopsy they 'may' allow her to forego the biopsy scheduled for Wednesday, but we won't know that for sure until tomorrow either. . .

Oh, and no visiting "hours" so I guess visitors can just come and go as they please. But please call Ashli's cell before coming to visit. Thanks!

Hope you find this info helpful.

--Alysia

Pivotal Week Ahead. . .

This week will be a pivotal week for Ashli and our family. As you can tell from her previous post, she is getting discouraged and needs us to lift her up and encourage her. Tomorrow (Monday) she has an appointment in Chicago. She has not had a good day physically today and needs the strength to mentally and physically make it through this appointment. Her dad and sister, Anne, are going to the appointment with her.Pray for their safety as they travel and their peace of mind. Pray that they know what questions to ask and that they have clarity of thinking as they deal with a lot of information. Pray that the doctors have wisdom in choosing the best course of action in treating Ashli.Ashli is scheduled to have a biopsy on Wednesday and this is a scary proposition for all of us. Pray that fears will be calmed and that the doctor's hand will be guided. Pray that Ashli suffers no unnecessary pain or damaging side effects.As always, thank you as you support us and pray for us.

--Perri Hepler

The Ship is Sinking

To be honest, I've been avoiding updating the blog. I know that is stupid. It's just that I am in a place where I cannot think of anything witty of positive to say.

On Wednesday night I got a voicemail message from Maureen at the University of Chicago. While I was in the hopsital there, they took another MRI. The "tumor board" met and reviewed my MRI results by comparing this MRI with the one on file from back in January. It is obvious that there have been changes and growth in the mass in my brain. At first, I was in total and complete shock. I parked my car in the garage and just sat there for a few minutes. My shock gave way to anger -- Why more bad news? I feel like I deserve a break here. Doesn't God owe me some good news at some point? (Don't worry...I already know the answer to that qusetion. I'm just attempting to be honest about my feelings here).

I think now I'm just in a spot where my spirits are sinking. I feel like this situation continues to get worse and worse. It's hard to expect it to get better because everytime I do I just end up being more disappointed. I spent the evening at Karl & Danielle's and they prayed with me. Danielle even came back and spent the night at my house (bless her and Karl for giving her up for the evening). That helped some.

At this point, I feel like I've grown numb. It almost feels as if I'm sleepwalking through my own life. I received another voicemail from U of C yesterday. I have a consultation with Dr. Yaminin, their cheif neurosurgeon, on Monday. They now would like to proceed with a biopsy and propose that we do the biopsy on Wednesday. On Monday he is going to give me details about the procedure and I will be able to tell you all more then. I do know that they plan to try to resect several samples of tissue so that they can come up with some conclusive answer as to whether or not this is cancer or scar tissue. I was really hoping that they would be able to use the ENT surgeon and perform the biopsy through my ear; however, that is an impossibility and the tumor board agrees that their best chance of getting a good tissue sample is by going directly through my brain. Obviously that is an incredibly scary through to me. I'm sure Dr. Yamini has cut into the human brain a million times -- but I've never had mine cut into. The prospect is terrifying.

I'm sure that this post gives you a number of specific ideas about how you can pray for me/my family. More than anything I feel like I need some renewal of hope. It all seems to be fading away at the present time :(

Return to the Land of the Living

Thanks to Mom & Alysia for keeping everyone updated during my absence; I am back among the land of the living. It appears as if the nausea and vomiting are at bay. Unfortunately, we do not necessarily have a definitive answer about what caused this in the first place. The good news is that the neurosurgeons did not feel like it was a result of intercranial pressure. This basically means that the tumor is not putting so much pressure on my brain that it is causing all the nausea and vomiting. In essence, it doesn't look like this is the result of some radical change in my tumor.

Instead, it seems like my body just worked itself into this ridiculous funk. All the vomiting put me in a state where I could no longer keep any of my medication down. That made me even sicker. My body was just starting to shut down. A good dose of saline and morphine pumped through an IV sure made a difference. They re-introduced my medications one at a time to be sure that a specific medication wasn't the culprit. I am now back on the full dose of all my meds. I'd say that getting some rest helped, but evidently they don't want you to rest in a hospital because they wake you up every freaking five minutes for one thing or another.

I had a follow-up with Dr. Press regarding my ear yesterday. It continues to have pollups and clots and other crazy growths. She elected to biopsy a piece of this tissue since we cannot seem to combat all the infection. Pray that we get some answers and relief fom that. Thanks for all of your prayers and support.

Thanks to Danna & Bobby who brightened up the otherwise dim oncology floor with some renegade balloons! I continue to hear from my friends, "Well... I've been wanting to call, but I didn't want to bother you." Apparently, everyone is adopting this mentality because NO ONE IS CALLING! Please don't be afraid to call. Unfortunately, I'm finding that a sickly life often yields a lonely life. ButI've got caller ID and, the truth is, I just won't answer if I don't feel like talking to you, so CALL ME!

Back Home Again in Indiana

After much frustration with the speed of the medical wheels turning to get all of the sign offs on Ashli to get her discharged, we finally headed out of of Chicago at 4:30 last night. Ashli is feeling much better. She hasn't vomited for a day and a half (which is much improved from every 45 minutes on Tuesday night). Her snappy comments have returned, and she had an entire nights sleep without an IV monitor going off 4 times or having her blood pressure checked. She is still tired and needs to take things a little easier, but her appetite is back and her mind is running full tilt. I am planning on going home tonight; she will be relieved to not have to hear my snoring and I will be relieved not to hear "Mom can you...............". The next time I take a road trip to Chicago with Ashli I hope to see more blue sky, restaurants, shopping and luxury accomodations. Thank you all so much for your faithfulness in praying for Ashli and letting her know how much you love and care for her.

Mom

An Unhappy Place

Apparently the oncology floor at Mitchell Hosptial in Chicago is a very unhappy place. . .

Not only do they not allow flowers, but they also don't allow "latex" balloons b/c they set the alarms off or maybe allergy reasons. . .We've been told mylars should be OK.

Mom just wanted me to let you guys know.

For the one person who already sent latex balloons. . .thank you for being our guinea pig and Ashli still got to see her balloons and appreciates it!!

--Alysia

Hi-Ho, Hi-Ho, to Chicago Ashli goes. . .

Just checking back in this morning. Last night Ashli was transported to the University of Chicago & Mom went with her. She stayed last night and it is quite possible she will stay through the weekend. . .(but nothing's been confirmed as to when she's coming home yet.)

They have her IV'd to get her some nutrients and Mom said she slept a lot better last night but still had some problems keeping things down.

Just an FYI: Some of the buttons on Ash's cell aren't working so well, so she's not able to really text b/c the one w/ "P, Q, R & S" isn't working. (obviously R&S are pretty important texting letters!)

Her phone # at the hosptial is 773-753-1577, if you need to get a hold of her, but please be sensitive since she's not been sleeping much. You may try try texting first and just ask my Mom? "Ok to call? Ye or No?" That way she can text back since she doesn't have an "S".

The address at the hosptial is: University of Chicago, Mitchell Hospital, 5841 S. Maryland Ave, Chicago, IL 60637-1470, Room # TS-653. Also, Mom mentioned that there are no plants or fresh flowers allowed on her floor. . .so keep that in mind.

Kelly Moses is starting a prayer chain for Ashli. This is the letter she sent:


Hello everyone.

As you all know, our dear friend, Ashli is battling Cancer.

We decided to come up with a Prayer Chain for Ashli. A spreadsheet has been set up covering everyday of the week; 8 am - midnight, in two hour segments.

We know so many people have been praying for Ashli and this way we know she'll be prayed for constantly.

If you would be willing to cover one of the time slots, please email Kelly Moses at curtnkellymoses@aol.com, with your name and email. We'll update the spreadsheet and email you any specific requests from Ashli.

Thanks for your prayers for Ashli.

"Pray for one another, that you may be healed." Jam 5.16b


You can sign up for time slots 7 days a week, 8am-10am, 10am-12pm, 12-2pm, 2-4pm, 4-6pm, 6-8pm, 8-10pm. 10pm-12am. If anyone would like to take a slot on a day or two you can email Kelly at the address above and she will fill it in.

Thanks so much for your continued prayers! We will be in touch as we know more. ..

--Alysia

Pray, Pray, Pray!!!!!

Ashli doesn't know I'm posting on her behalf today, but I wanted to give you all a quick update.

Her nausea is just getting worse. I was with her on Friday night and she ate a small amount of spaghetti & had a little salad and probably 40 minutes later was puking it up.

Mom & Dad were with her on Sunday and had pizza, same story. Basically, she's keeping nothing down, including her meds. Finally today they called Doctor Wheeler and he said for her to go to the Emergency room.

Mom is with Ashli right now and they are at Elkhart General Hospital. I'm not sure if she will be admitted or not. But we sure could use your prayers right about now. I know University of Chicago wanted to wait until the end of March for her next appointment, but if she can't even keep her food or meds down, my hunch is they will speed things up a little.

Please pray for her spirits and her physical well-being.

Thanks,

Alysia

Jumping the Gun

Okay... the whole "first taste of pain management" was simply a tease. I am struggling so badly with nausea and vomiting that I cannot keep any of this helpful medication down. It seems like am stuck on a pendulum -- one week up, one week down. At this point, I'd settle for being caught in the middle with no movement whatsoever.

I have tried to isolate the cause of this and cannot identify a culprit. All I know is that they need to make a Pedialyte for grownups that tastes like Diet Coke rather than a half cup of orange drink mixed with 5 cups of sugar.

Pray. Hard.

Improvement

The only new tidbit I have to offer you is that the medication is definitely helping. I think I'm getting my first real taste of "pain management."

Alysia Pretty Much Covered It

If you read Alysia's last entry for me, then you've pretty much got the update. I definitely want to reiterate that I definitely feel more comfortable working with the University of Chicago (UCH) after Tuesday's appointment.

Dr. Stenson (She one of the surgeons on my team at UCH) explained that I've been the topic of discussion at almost every meeting and that they've really been discussing and working on the best plan/course of action for me. Dr. Haraf (the radiation oncologist on my team) says he will not put me through another round of radiation unless we can prove with certainty that the "hot spots" on my PET Scan is new cancer growth. The only two options for proof are (1) biopsying (they are looking for a safe/effective way to resect a good amount of tissue from different areas and are not certain whether they need to go through my ear or my temporal lobe (the area of your brain just behind your ear). (2) They can monitor the growth using frequent MRIs and other scans. This would mean scanning every two months and monitoring changes. I'm already close to the two-month point, so that is the reason they've scheduled another apopintment in late March.

Right now they've completely changed my medication and Dr. Stenson is hoping that the news meds give me some relief. One of the major changes is that I am now on a pain killer that is designed to alleviate pain in nerve endings. I am only taking one a day right now, but I will gradually move up to taking the full dose of 3 a day. They are very hopeful that this medication will relieve some of the discomfort in my face. I already think it is working a little with only 1 a day; however, it is making me very tired.

Please continue to pray for the doctors (and me) as we make important decisions about the next course of action. My spirits are definitely a little better after Tuesday's visit and after reading all your comments to the last few blogs. I really appreciate those of you who continue to check in and comment (thanks especially to you Kimberly T. It means a lot that you checked and are praying).

I'll try to keep everyone posted or have Alysia post when I can't.

Some Answers at Last. . .

Ashli had another trip to Chicago yesterday, (Yes, she and Lori were crazy enough to brave the toll-road in this weather!) but still doesn't have access to a computer, so she asked me to log in once again. . .it seems like we are getting some answers at last.

First, I should mention that Ashli is feeling MUCH better about University of Chicago after yesterday's appointment. With their recent unorganization, it raised some concerns for everyone as to if this was really a place we wanted her/she wanted to be. . .it seems the appointment yesterday eased most of those worries.

Let me start out by saying, one thing I did not realize is that one of the biggest reasons the doctors are having such a hard time figuring out what this "growth" is, is b/c they are not familiar with the side effects of the Proton Radiation treatment Ashli had in Loma Linda. There are only a few sites in the US who even offer proton radiation, so part of the reason for the difficulty sounds like it is b/c of not knowing what side effects come from the treatment afterwards. It sounds like the doctors in Chicago are trying to work with Loma Linda to figure things out, but they are not having much luck, which leaves them to try to figure it out on their own. At this point, they still feel strongly they will need to do a biopsy of some sort. The reason behind this, is that the chemo and re-radiation treatment would have negative effects on Ashli's body and they don't want to put her body through the harsh treatment unnecessarily. Ashli is due for another scan towards the end of March. The doctors gave Ashli some new pain medication and nausea meds to try to hold her over until they can evaluate the next set of scans for any "change" and then proceed with deciding the right type of biopsy (nose--more invasive vs. temporal lobe--less invasive).

It sounds like they are headed in the right direction. It also sounds promising that they would allow Goshen to administer chemo in Goshen. If they decide upon re-radiation, that will be much touchier and Dr Haraf (I presume the radiologist in Chicago) will make the determination if he is comfortable with Goshen administering, but sounded less promising for the re-radiation.

So that is where we are at. Ashli's next appointment will be in late March. Continue to keep her in your prayers that her spirits will be lifted in the coming weeks to prepare her for what is ahead!

Thanks for your support and prayers!

--Alysia

Updating for Ash

Hi Everyone, It's Alysia again, just popping in to give you an update on Ashli b/c she still does not have her laptop in working order yet.

Monday Ashli went to Chicago and met with Dr. Leonetti (Loyola) for a second opinion regarding the growth. Unfortunately, he said that based on her symptoms, he is pretty certain the growth is cancer. He (and the other doctors she has met with) all agree that they do not believe the growith is operable. Lori Cloud (God bless her) is taking Ashli next week to have another appointment with Dr. Vokes (University of Chicago) and a surgeon regarding the possibility of biopsying. One thing I know Ashli & Lori will question is why she should have a biopsy when they told her that regardless of the results, they will suggest chemo and/or radiation treatment. We all think it seems silly to put her through the trauma of a brain biopsy if their treatment plan will be the same regardless. Hopefully we will get some answers to that.

Here are some ways you can pray for her right now:

• Pray for Ashli's spirits. I can tell they are deflating a bit. She needs to have some positive things happen to rejuvenate her and prepare her for what is ahead.
• Pray that the doctor's will agree to allow Goshen administer the treatment so Ashli doesn't have to move again. THIS IS HUGE!!! She does not want to go through a "California" separation all over again when she is feeling horrible & alone. None of us feel all that comfortable about her having to live elsewhere either.
• Pray for Ashli physically. She is mostly sleeping and puking she needs some relief of these symptoms to help her feel well and prepare her body for what is ahead physically.
• Pray for clarity in the appointment and that they will ask the right questions. Pray that there is a logical explanation regarding the biopsy or that they can allow her to skip it and just move forward w/ the treatments.

Also I just wanted to say a big THANK YOU to those of you who have driven her to Chicago for appointments etc. It's a huge relief that she has other people in her life who are able to help out as well! Thank you so much! It has made things much easier for her and for all of us.

One last thing. . .I know at one point, Ash had blogged about the Old Spice contest my husband and I entered and we found out that we ACTUALLY WON!!! So to anyone who voted for us, or took the time to pass the info onto your friends etc we appreciate it so much! We are waiting to hear back from them now re: the itinerary we sent for our vacation this summer! So anyone who voted. . .THANK YOU! And pass the word along to anyone else you had vote for us!

---Alysia

Finally Some Info.

So... we found out in an interesting manner what UCH's plan of attack is. After my meeting with Dr. Yamini on Monday, I was fully expecting to hear back from Dr. Vokes concerning his plan of attack. I didn't hear anything until late on Wednesday night when I received a phone call from Dr. Yamini's nurse. She wanted me to come to Chicago for another appointment on Thursday. When I told her it was simply too late of notice (she called me at close to 5:00 PM on Wednesday) She responded by telling me that it was really essential that I come because they wanted me to book a hotel room and they were planning to do a biopsy of my brain on Friday morning.

I laughed and told her there was no way they were biopsying my brain on Friday morning when Dr. Yamini didn't even think he was the surgeon who should be handling my case on Monday. Perhaps brain biopsies are a daily procedure for them, but not for the patient.

After turning down that appointment, I finally started getting some phone calls from Dr. Vokes people. Dr. Chung, his assistant called to share my PET results with me and explained that they really needed the biopsy because there was no other way to determine if the activity showing up on the PET Scan is scar tissue or cancer. However, Dr. Vokes did agree that even a biopsy would not be definitive and there is probably not a way to conclusively determine whether there is any cancerous cell growing in my head. I still have a number of questions for Dr. Vokes, so I scheduled another consultation with him on the 13th. Lori will be going with me and we will be preparing a list of questions to ask about their recommendations for treatment. I may go ahead and schedule the biopsy and just cancel if we decide not to proceed with it.

Meanwhile, I will be meeting with another surgeon, Dr. Leonetti to get a second opinion about whether or not I am a candidate for surgical resection. From everything we are hearing, surgery is simply not an option for me at this time.

I could really use prayer in a number of areas:

1. My spirit is really deflating. It is hard to keep a positive attitude and stay optimistic through all of this.
2. Wisdom to make the right decision. The biopsy itself is pretty risky due to the amount of radiation I've had on my head. Furthermore, they are recommending a second round of radiation which often has devastating consequences to the body coupled with chemo. Deciding on the right course of treatment is crucial at this stage.
3. My health. I've pretty much been alternating between sleeping and vomiting. I need a reprieve from that vicious cycle. I feel like I'm back in California (except that I don't have the lovely and entertaining Jeremy & Kristin by my side).

I'll try to keep updating as much as possible. Still no progress on the laptop (save for the fact that my man Kevin Edwards is working on it).

Still Nothing to Report

For all of you who are logging in religiously to figure out what is going on with me. I still don't know! This is perhaps the most frustrating thing about cancer. I had another appiontment at UCH yesterday (Thanks to Jen who drove me all the way to Chicago in bad weather and had no companionship all day long because I slept virtually every moment of our trip). I met with Dr. Yamini, the neurosurgeon who they thought might be the one to do my biopsy (if, in fact, a biopsy were decided upon). I met with Dr. Yamini because they canceled my apppointments with the surgeons on Friday as they were ENT surgeons and ultimately I would probably need a neurosurgeon.

I had an MRI at 8:00 am and met with Dr. Yamini around 10:00. The hope was that my morning MRI results would be uploaded in the computer so that he could access them during our appiotnment. No such luck. He elected to review my past scans using the CD-Roms I keep with me in my medical records. He couldn't open those either. Instead, he reviewed the narrative reports of my scans. After reading them, he decided that perhaps an ENT surgeon should be the one to do my biopsy and decided he would need to discuss my case with Dr. Stenson (the same surgeon whom I had an appointment with on Friday but it was canceled in order for me to meet with him).

I still have not heard the results of my PET Scan; however, it must not show any metastases as that would probably give them some definitive answer as to whether or not this is cancer or scar tissue and they still seem to be proceeding like they have no clue what this really is.

Further complicating matters, I talked with Carol, a fellow ACC survivor (I think she has had ACC for over 20 years) about my case and where we're at now. Carol really discouraged chemo for the general reason that chemo does not appear to have much effect on slow-growing cancers and encouraged me to question the doctors intensely before considering to any re-radiation as usually the side effects are much more severe the second time around.

I guess ultimately I need prayers for wisdom in my decision making and a general peace about the next step.

Sorry. I sure wish I could let you all know more :(

Worst-Case Scenario

The official results of my yesterday's PET Scan should have reached Dr. Vokes sometime today, but I have not heard any word on these results. I did receive a call from Maureen, the surgical oncology nurse, who informed me that the tumor board met and discussed my case yesterday. The board decided that my tumor is located in too tricky of a position to surgically remove and has decided that surgery is off the table. Instead, they are planning to give me more radiation coupled with chemotherapy. The theory being that my cancer is growing in an enviornment where nothing should be able to grow (7,600 rads of radiation should kill all living cells). Although they cannot confirm that growth is cancer rather than scar tissue from my first round of radiation, there is no way to determine what the mass is so they have to treat me as if it's the worst-case scenario.

There is still a slight possiblity that they could decide that it is scar tissue and give me some time before moving forward with chemo/radiation. That is contigent upon some good PET Scan results and securing Loma Linda's radiation records. We are having an incredibly difficult time getting these records from California.

So... at this point there is nothing definitive, but a likely course of action. Of course, both radiation and chemo. can be administered at Goshen, so I am going to request that they transfer the protocol to Dr. Wheeler so that I can be treated there. Pray that this works out as I do not want to be away from my friends and family for 8 weeks again (even though Chicago is much closer, it is still the same to me).

Chicago Bound

Just wanted to update everyone with some more information. I am returning to Chicago for more testing this week. Dr. Vokes and his team want me to have another PET Scan and want it to be adminsitered at their hospital. My last PET Scan was at the beginning of December -- in the world of cancer 6 weeks is a long time. If there are no new metastases, it will be a good sign that the new mass in the base of my skull may still be just scar tissue. Dr. Vokes is worried simply because I experienced a change in symptoms and a digression in my facial nerve functioning about the same time that we discovered this new growth in the PET Scan that Dr. Wheeler ordered.

I am scheduled for the PET Scan at 10:00 (11:00 Indiana time) a.m., so please keep me in your prayers then. I also have consultations scheduled with Drs. Redleaf and Stinson (the surgical oncologists who work with Dr. Vokes) at 3:00 and 3:30 respectively. Dr. Vokes feels that, unless we can conclusively determine that this mass is scar tissue, they will recommend an aggressive course of treatment including radical surgery (to remove as much of the cancer as possible) and radiation coupled with chemotherapy. Although research shows that adenoid cystic does not respond well to chemotherapy, there is research that shows that chemotheraphy coupled with radiation increases the effectiveness of the radiation.

The good news is that this team comes highly recommended. The bad news is that I've already overwhelmed all my readers with the names of various doctors... if we end up working with UCH, we will be adding 8 news doctors to the mix (each doctor works with a partner and I would be involved with 4 separate teams).

I think one big area where I need prayer is in making a decision. I'm getting conflicting advice from each doctor. Ultimately, the one I trust the most is doctor Wheeler; however, he has deferred to Dr. Vokes and wants Dr. Vokes to make the recommendation about the next step. I have a second appointment with Dr. Vokes on Friday. At this point the team will have the results of Tuesday's PET Scan and will have conferenced together about my case. On Friday I will be given their recommendation for a course of treatment. Lori Cloud is going with me to this appointment, so pray for both of us that we would have the wisdom to ask the right questions. And especially for Lori because she has to relive so much of what they went through with Ali as she supports me.

There is another surgeon who was recommended to me by the Porsche family. I have been playing phone tag with his nurse trying to set up a surgical consultation. Everyone thinks that I should put that on the back burner for now and focus on what UCH recommends, but I still feel like my gut instincts have been good so far and I'd like to meet this surgeon before I hear Dr. Vokes recommendation as I am not sure he will even consider taking my case if I elect to go with a surgeon outside the UCH team. I would like to be able to propose that question at Friday's conference. I have an appointment scheduled with him on Feb. 5, but I called to try to reschedule it for sometime this week and was waiting to hear back from the nurse before everyone told me to hold off on Leonetti. I asked for an appointment late on Tuesday or early on Wednesday. If that could be worked out, I would have the opportunity to get a gut feeling for Leonetti prior to hearing the UCH team's recommendation.

I am still without internet access and can only update from someone else's computer. Unless we receive some new information on Tuesday, I probably will not update again until after our appointment on Friday or I will ask Alysia to log on and update everyone after Tuesday's appointment.

Thanks again for your prayers and support!
Ashli

One Down... Three to Go

Karl drove me to Chicago yesterday and we had our first consultation with Dr. Panje (he's the first specialist I saw after my diagnosis in April). Dr. Press initially referred us to him becasue he is an ENT as well as an expert in head/neck cancers. Dr. Panje is the one who recommended Loma Linda for proton radiation and told me if surgery was ever an option, he'd be happy to see me again to make some recommendations.

Dr. Panje looked at all of my images and came to the conclusion that there is no conclusion. There is absolutely no way to determine whether this is scar tissue or cancer. The only option is to biopsy. Not only would the biopsy cause any cancer cells to grow, it would also be quite dangerous to go in, take tissue, and close me up again. If that were to happen, it would be better to go in and take out any masses that do exist. This is problematic because whatever is growing is attached to critical nerves. Ultimately, Dr. Panje thinks I need to see someone who is even more knowledgable about the current research on adenoid cystic. Guess who he recommends? Dr. Vokes. Fortunately, I have an appointment schedule with Dr. Vokes today.

I know everyone is anxious to hear what happens at these appiontments, but I have literally been on the phone 24/7. I will try to update the blog quickly (although I know we will not be getting back until late tonight) or I will get in touch with one person who can update everyone else. Keep me in your prayers today. Thanks!

Reliving a Nightmare

So, I've basically had absolutely no internet access for the better part of January. My laptop has been with Circuit City for the last week and now it is going to have to get shipped into the manufacturer for repair. I probably won't see my laptop for over a month :(

The worst part of all of this is that MAJOR changes have taken place and I could not update you all. My symptoms (the bells palsy, problems blinking, bruising,) have been getting worse each day. I have been under an immense amount of stress trying to get everything ready so that we can move into the new house (move in is scheduled for Friday, but there is still a fairamount to be done).

More importantly, I feel like I am reliving the nightmare of relocating to California all over again. Dr. Wheeler believes that Dr. Vokes (the specialist he thinks is best- equipped to handle my case) will not be able to definitively tell whether or not the new growth is scar tissue or cancer. He will likely treat me as if he is dealing with the worst-case scenario and opt for an aggressive treatment. In all likelihood, he will advise me to go home, pack my things, and come back to Chicago for chemo.

I talked about this with Lori for a long time last night. Ultimately, I will follow the doctor's advice, but there is no reason my chemo cannot be administered at the Center for Cancer Care so that I can live at home. I would still have to commute to Chicago at least once a month/possibly be inpatient for a week or so, but at least I'd have the support of my friends and family during most weekends and even the full weeks of chemo where I'd be at home.

The prospects of where we're headed with treatment are stressful enough, but at the same time, my pain is also increasing. Dr. Wheeler decides to mail me refills on all my prescriptions and increase some of my pain medication as I am not really supposed to be driving at this point (my vision is really affected by the bells palsy). I wait and wait for the scripts to arrive, but they never show up. As it turns out, they are forwarded to California. After waiting all summer long for my mail to arrive in California (which it never did), my mail starts arriving there now that I'm home. Furthermore, many of my credit accounts have automatically updated my address to the temporary California address from this summer. Basically, I have received virtually no mail since April (save for magazines and junk mail). Because none of the mail has been returned to the sender, most of my bills have been sent to collections and my credit score has dropped by over 100 points in the last month.

In the midst of all of this stress (or perhaps because of it or perhaps because I've only gotten about 10 hours total sleep since Christmas [no exaggeration]}, my body is at its capacity with Decadron (my steroid). I think I mentioned in an earlier blog that, when Dr. Thornton prescribed steroids to help with my swelling/bells palsy, he put me on a rather large dose of Decadron. He advised me to only teach half days because he was worried that Decadron causes people to be so manic that I could snap on one of my students. He monitored me closely and asked if I was hearing voices, had suicidal thoughts, etc. each time he saw me (evidently he had recently had a patient (female, around my age, same dosage of Decadron) try to jump out a third story window because she thought she could fly.

Well... shortly before Christmas I started getting pretty manic and everyone around me definitely noticed something was off. I had two isolated episodes where I clearly heard a voice, but it was pretty humorous and not dangerous, so I told my close friends, family, and colleagues about it. We laughed and I told them to start monitoring me for a psychotic break. I was pretty much joking, but I'm pretty sure it actually happened sometime right around Christmas. I called Dr. Wheeler and told him I was a little concerned with where things were headed with the Decadron/stress/lack of sleep and, although he was out of town, they scheduled an appointment for me right away. The doctors who reviewed my case were certain that the Decadron was responsible for what was happening, and they felt it was imperative to get me off of it right away. The typical taper for Decadron should be 12mg to 0 mg in about 4-6 weeks. I would be going from 12mg to 0 mg in 5 days. Within 24 hours of tapering boff the steroid, my face was swollen almost as badly as it was last April, my friends, family, 17 year-old foster daughter, and colleagues had to literally take shifts babysitting me to ensure my safety and to ensure that I get some sleep.


Well... today I will take my last dose of Decadron. Even though I've only gotten about 10 hours of sleep since Christmas (honestly not an exaggeration), I have a little more clarity without the Decadron. I think once I get some real sleep and we are not stuck waiting to move into this house and waiting to find out what's going on with this cancer, I will be back to normal. I'm already a little more clear-headed without the Decadron alone (the trade-off is intense pain and an increase in the swelling/bells-palsy symptoms).

I'll try to end on that positive note. I just want all of you to know that there are many of you who have called over the last week and I have either not returned your phone calls at all, or called and not made any sense whatsoever. I apologize. It was a terrible time to lose access to the internet because I have definitely needed your prayers and even some tangible support with moving/getting the house ready, meals, driving me to appointments, etc. I think once I am able to get some sleep (don't worry... it is going to look like I stayed up until 3:00 to write this blog, but I've actually fell asleep typing it around 12:30 and with my finger on the letter l which has been scrolling across this screen for the last 2 1/2 hours while I took a nap), finish up the house so that we can potentially move in as scheduled this weekend, I will be back to my old self (maybe some of you will even want to re-think praying for that to happen and ask God to make a few minor modifications as he refines me :))

Not Enough Hours in the Week

The house is progressing quite rapidly. Corlissa and I basically have the green light to move in whenever we're ready. I haven't been in any hurry because we are paying for apartment through January 20th anyway. I was planning to do a little painting this week, but nothing definite. I received a wake-up call from Coach Rost and some amazingly generous Memorial volleyball players who devoted an entire day of their break to volunteering at my house. So, I've been running around like a chicken with my head cut off getting supplies for the them and for several other pople who have set aside their own time/projects to help get this propery ready. It seems like it was Monday just yesterday and I feel like I've spent most of my Christmas break in Menards. I can't believe we're going back to school on Monday.

Thanks to all of you who have been helping out and I'll keep you all updated on our progress.

Please Vote!

My sister, Alysia, and her husband are one of five finalists in the Old Spice "Effortless Adventure" giveaway. They were best friends, turned high school sweathearts, turned marriage partners and have been together close to 10 years. I've silently watched a number of marriages and they really do have the makings of a great one. You can vote for Alysia & Tory once a day using the following link. They are the couple standing in front of the race car (Yes... I know...I love them enough I still claim them)

http://www.oldspice.com/_os/effortless_adventure

*If the link is not active, you can simply copy and paste the link into your address bar.

Thanks Everyone!

In No Real Hurry

I have not yet called Dr. Vokes, the head/neck cancer specialist the Goshen team recommends. I found some good information about him online, but it does not appear to me as if he is a base of skull surgeon. Alysia got some good information about him from the Rare Cancer Alliance. I'm still waiting to hear back from Dr. Luu and the team in California. They are going to try to determine from the scans whether it is disease or scar tissue. My gut tells me they will not have a definitive answer either, but Dr. Luu has already said he has a recommended surgeon for me. In the meantime, I'm really not in such a hurry. I've gleaned from everyone that I will likely be having a major surgery and it is probably worth my time to really research the surgeons. Meanwhile, several people have recommended some alternative therpaies such as colonics (removing toxins from the body) and acupuncture. I was a little skeptical about acupuncture for spritiual reasons (I've heard great feedback about the treatment itself). I stumbled upon a referral to an acupucnturist and it turns out that he is a 7th Day Adventist (Loma Linda is the biggest 7th Day Adventist facility in the U.S.) and a true Christian. He basically went on record and told me that he sensed God wanted me to be healed. He also told me that he felt that, between the colonics and the acupuncture, my face could return to normal within two months without any surgery at all. I've already had two treatments -- no marked changes at this point, but I'm hopeful.

My symptoms -- particularly problems with my equilibrium -- have been intensifying over the last few days (I did not disclose all of this in the last blog because it had just started and I did not want to worry anyone (including myself) prematurely). I have passed out/blacked out three times (two times in the shower when I was already sweaty and overheated from the steroids and the addition of the hot shower water seemed to put me over the edge) and again today when I was leaving Dr. Press's office. I did not actually fall down, rather I ened up getting myself onto the ground just before the fall. I waited it out for 10 minutes or so and was fine.

I am definitely stumbling around everywhere when I walk, tripping over things, and I have had to brace myself/sit down on several occasions to prevent myself from passing out. Despite all these amazing signs from God, I was starting to get pretty worried about this -- if I'm in this condition, I shouldn't be driving, living alone, etc. My only consolation was the fact that I've had some pretty intense ear pain lately and thought maybe there was a chance my ear is infected (the last few times I've had it looked at, it has been filled with fluid, but no sign of disease. Dr. Press worked me into her schedule today, and she is pretty convinced I've got an infection. She took a culture to be certain, but she also went ahead and put me on the antiobiotics. I started my first dose this evening. Pray that once the infection clears up, my equilibrium will stabilize and return to normal.

Another area where we (Corlissa and I) could use prayer relates to this crazy housing opportunity we've stumbled upon. Ultimaely, I feel like I am just throwing money away in an apartment. I could afford a small, modest house for the same monthly payment. I just have not felt good about the prospect of locking into a mortgage considering the uncertainty of my health. Furthermore, if I were to move, I'd want to be in a house that had long-term possibilities. I could not afford a mortgage on that type of house right now (I'm looking at a significant raise when I get my master's in the fall, though). Anyway...Jacquie(Rost) told me about this crazy housing opportunity. All signs point to the fact that God might have led us to this. She has a friend who purchased a house to "flip", but since the market slowed down, ended up losing money on the deal. He lowered the purchase price significantly (almost $20,000 less than it's appraised value), but it still hasn't sold. He's now making two mortgage payments and losing additional money every month. In an effort to re-coup his loss, the man is interested in selling the property on land contract but is still willing to take the lower purchase price. I put in a phone call to him shortly after I heard about the house. As it turns out, there is another girl that was likely going to buy on land contract, but she really could not afford the payment for the first year. Marti (the homeowner) was going to negotiate and let her pay a rental payment for the first year with the agreement that she would be able to assume the entire mortgage at the end of the first year. When Marti found out I was interested he responded by saying that he heard my name and just felt like he needed to talk things through with me before forging ahead with this other girl. I've been to the house three times since our first conversation. My parents have both been there. Basically, everyone feels there is pretty much no way I can go wrong with this deal. It is in move-in condition and would not even need to be painted in order to be livable. The only financial expense I'd want to make fairly quickly would be furniture for the basement (it is huge and finished and would be our primary living space). I'd keep what we're using in the apartment as the furniture for the formal living room upstairs. That expense is not immediate; however, it would be really nice to be able to use that space downstairs as quickly as possible. The yard is a mess (we would need to re-seed or lay new sod in the spring), but most of it is just manual labor -- raking, tree/branch removal, etc. The only drawback to this whole deal is the fact that Corlissa and I finally feel like we've settled into this apartment -- her room is decorated, we've got everything in its proper place. The idea of packing up, cleaning a new place, working on a yard, making decorative choices -- perhaps as soon as next week, is a little daunting. It seems like just yesterday we called in favors from every Memorial coach and all my friends' husbands :) (God Love you all!) The decision should be made by the end of the week. Please pray that I make the right one. I have a real sense of peace aboout this house and all signs point to the fact that God had a hand in bringing us the opportunity. It's still a big, intimidating decision, tough. Oh... I forgot to mention the most appealing thing about the house: It is within walking distance of the Rosts's. This is good for me socially as I spend a good chunk of my time there. More importantly, it puts me in close proximity to someone close should I ever need medical help, have an emergency with the house or would be convenient in the event that I had to be gone for a few weeks for surgery. Corlissa could probably just stay alone with the Rosts that close by.

As you can see, my steroids are still in full effect. I truly appreciate those of you who are praying for sleep. I want you to know that I feel your prayers are being answered. I've been sleeping off and on closer to 6 hours a night. A huge improvement from the 4:30 am - 6:30 am night routine I was on :) I seem to have reverted back to my old ways for this evening, but I can also tell that my body wants to sleep... I'm simply not cooperating becasue I have a lot of things I think I need to get done (think being the operative) and I'm really hungry for an omellette right now.

I so appreciate all of you who are faitful readers and prayers!

Back to Square One

I apologize to those of you who were expecting an update yesterday. I've actually had news since Monday night, it's just that it is so insignificant that I could hardly bear the thought of updating.

Basically, I was referred to another specialist. The Goshen doctors feel like they simply cannot make any recommendations without knowing whethere they are dealing with scar tissue or disease tissue. The biopsy is a risk they are not willing to take (I get the impression that some of this is related to liability issues). They do feel that the type of biopsy I would require needs to be performed by someone with extensive expertise/experience in dealing with the nerves. The team recommended Dr. Everett Vokes. He's at University of Chicago Hospital. Dr. Wheeler commented that he is "the best head and neck cancer specialist in the United States." I've looked up Dr. Vokes and he's got a great resume. He specializes in some treatments that could be really beneficial to my case and his secondary area of expertise is lung cancer (which is benefical in my situation as ACC tends to metastize to the lungs when it re-appears around the 10-year mark).

Ultimately, there is likely going to be some major surgery in my future. The team wants me tol have the best possible surgeon -- whether it be to do the biopsy or to resect the scar tissue. Of course, I totally agree. My frustation is that I've supposedly seen three of "the best in the United States." They can't all be the best can they? I mean, my first consulation was with Dr. Panje in Chicago. He offered to see me again post-radiation and give me further advice -- particularly if surgery became an option. I think he would simply make a referral to a surgeon, though. It is actaully a surgeon who was recommended by the Porsches (a Memorial volleyball family whose daugther had some growth in a similar location and had an incredibly successful surgery) Dr. Luu (my California doctor) is in the process of looking at all my tests and telling me his recommendationl. When I was in California, though, he told me that there is only one surgeon in the United States see -- this guy is located in Arkansas (or some other obscure state that may not really exist). How the heck are all three of these guys the best in the United States? I think there should be an oncology pageant or something. Give one doctor a crown, send me to him, and let's call the rest finalists. So, I'm going to call this doctor and ask some questions, but ultimately, I think we are at a standstill for months now. Defintiely nothing happening before Christmas.

Meanwhile, I am really struggling with steroids. For the most part, the steroids have been easier this round than last spring. I can definitely identify the negative side effects, but they have not debilitating. The sleep issue has been the worst. I think the loss of sleep is what is actually exacerbating my eye and perhaps causing my face to digress a little more. I get annoyed at minor things more easily and am perhaps more honest than normal, but last round incited many fights with Corlissa and a lot of hurt feelings. I have not had that issue this time and don't think I've been as "bitchy" as I was then. The biggest annoyance is the physiological drive to be in perpetual motion -- either talking or doing. I cannot shut my mouth (I'm annoying everyone around me) or stop moving. In some ways, that brings with it some positives.

I've asked Dr. Wheeler about the possibilty of going off the steroids. Dr. Wheeler basically flat out told me that I could not stop taking the drugs (he is usually more open to discussion about the topic) In fact, he was hesitant to let me change doses or start taking only two doses. His only concession was that I could take my last dose at 3:00 PM instead of with dinner.

However, the last few days have brought on some concerning changes. My face has really swollen in the last two days, my eye is going crazy, my equilibrium has been off (I have had two or three episodes of dizziness which has actually caused my equilibrium to be off to the point where I look like a drunk walking), and I've become more forgetful/clumsy (this was a major problem last spring but I had not been experiencing it until this weekend when the other changes started). My gut instinct is that my body is just crashing due to lack of sleep. I think that is the reason the side effects are really intensifying. On the bright side, my system crashing has forced me to sleep. Anyway... last night I finally slept. I slept from 1:00 until 5:30 this morning. I probably need to see if I can simulate this again for a few days and see if the side effects become more manageable but ultimately I am left wondering what to do if something does not change.

My biggest request is prayer regarding sleep. If I could find some happy medium with sleep, I truly believe the steroids would become a non-issue. I believe that my physical symptoms would probably be more manageable as well. I did ask about the possibilty of some sleep aid coupled with the steroid, but Dr. Wheeler says that is not a good idea. I need pray and am open to all suggestions.

Secondly, I ask you all to pray for guidance regarding my next step and finding the doctor who will ultimately be my surgeon. I trust Dr. Wheeler and have no hesitation with any recommendation he makes. If I have to choose between two of the best and one is in Chicago, the other in Arkansas. The choice will be easy. But I feel like there is a third choice on the table and that leaves me deciding between two surgeons who are both in the Chicago area. I would love it if there was some clear sense/guidance in this matter!

Sorry to make you all wait for more of the same "we still dont' have anything concrete" news.

The Scoop

So...we've got some PET results, but they are really inconclusive. Essentially, the PET Scan definitely confirms that there is an area with some new growth in my brain. The results are not clear about what the growth actually is. Evidently this has caused upheaval at the Center for Cancer Care. Dr. Wheeler and another physician have reviewed the results and truly believe that what they are seeing is either the growth of scar tissue of the residual effects of treatment. However, one of the radiologists and a fourth physician are convinced that it looks like cancer and that it appears to be metastisizing. Everyone does agree that we need to come up with an a definitive answer.

A major conference concerning my case has been scheduled for Monday. All the radiologists and oncologists on staff will be reviewing my case and coming to a collective decision. It is not a matter of them voting and deciding to go on record and say "Oh... it's just scar tissue," Instead, they will debate about the best possible way to get conclusive results. In all likelihood, the team is going to recommend some form of biopsy. This is not anyone's first choice as biopsying cancer is not usually a good option. Cutting into the cells usually gives them new life and the ability to grow. Even if that does not happen, it usually results in swelling /irritation of the already-delicate tissue. Adding insult to injury is my recollection of my diagnosing biopsy last April: I started off the week as a normal-looking gal. Four days later mouthwash comes shooting out of my mouth when I gargle, I can't put on makeup without holding down my eyelid, and I can no longer smile.

Further complicating this situation is that they will need to biopsy tissue from the area surrounding my brain stem. This could mean an invasive biopsy where they actually cut into my skull and resect tissue (probalby not inpatient, huh?). There are several different biopsy options that the doctors may bring to the table... as a general rule, the more invasive the biopsy, the more likely they are to get the definitive answers taht they need.

The bottom line is that I could be facing some form of inpatient surgery as early as next week. On the bright side, there is probably a good chance that it is something they will do in Goshen. I would expect to hear from Dr. Wheeler regarding the team's recommendation by the end of the day Monday. We are also overnighting the MRI/PET scan results to California where Dr. Luu and a team of Loma Linda's doctors will also conference and make a recommendation. I will try to update the blog as soon as we know something.

Pray for wisdom for each team of doctors as they meet. I would specifically like to pray that both teams (Goshen and California) reach the same independent decision. But the bottom line is that, in my heart, I trust Dr. Wheeler. I have an unwaivering trust in him that I cannot explain. I thank God for that. For that reason, I would requst taht some of you even pray specifically for wisdom for him.

Of course, I am definitely not excited about the prospect of an invasive biopsy (especially in light of the fact that it will probably exacerbate the problems with my facial muscles), but in my heart I truly am not restless about this.

Thanks in advance to all of you who I know are already on their knees and surrounding me in prayers. Words cannot describe the peadce that that brings.

Still No Word

For those of you who are checking... no news yet. I did call Center for Cancer Care today and left a message for Dr. Wheeler asking about the results. Hopefully I'll get a return call tomorrow. Thanks to those of you who continue to hope, pray, and check.

My Baby

Last night was the Winter Dance. I volunteered to take tickets at the door. Perhaps I'm a little biased, but I truly believe my daughter was the most beautiful girl in the room. Ricky didn't look too bad either :)

Taking pictures last night reminded me of prom. I don't think I've even posted any pictures from that, so here goes:

Nothing to Report

Well... the PET is over, but there is no news to report. Normal results would probably take until Tuesday or Wednesday of next week, but I have a feeling Dr. Wheeler will try to get them earlier. I will, of course, update as soon as we know something.

I have not had much nervousness or preoccupation leading up to the PET Scan; however, shortly after I received my injection, I was overwhelmed by some pretty negative gut feelings about the test. This is a little concerning becasue my gut instincts are fairly reliable. The thoughts were pretty fleeting, and I am not meditating on them by any means. Pray that does not happen. It is neither productive nor helpful.

There could be an alternate explanation for the pessimism. My colleague's grandson (5 years-old) passed away this week after battling his own brain tumor. He was diagnosed several months before me. It is just such a sobering reality -- I wouldn't wish this on anyone, but Cancer needs to be more selective. Please keep The Raval Family in your prayers. I cannot fathom what they must be going through.