Friday, November 30, 2012

Home Bound

Mom's Anti-Xa test from last night came back normal at 0.50. We were under the impression that they would perform two more Anti-Xa tests today before releasing her. Apparently, we misunderstood or the doctors changed their minds. At 8 a.m. today, after missing the window of time for the test, Mom's resident came in. He doesn't  believe that any additional tests are needed. To say that we were frustrated would be an understatement.

Ultimately, the doctors do not know where the blood is coming from or why. They are fairly certain that it's not coming from her lungs or her GI tract. Thus, they have deduced that it's coming from her nasal passages. This is great news, assuming it's accurate. Mom will continue to watch for signs of bleeding, which Donita was nice enough to discuss with her with morning. Dr. Goswami has been unable to stop by, as he's been out of town and busy.

The care that Mom has received at St. John's has been ok. Not, by any means, what she is used to at Prarie Heart Institute, but standard care. If only every doctor would fight for answers like Dr. Goswami does, then Mom would sleep much easier at night. Most of the understanding we have received today has been from Donita Schrey. Thank goodness she's a part of our lives!

Anyway, Mom's being discharged this afternoon. She will continue her Lovenox shots and regular Anti-Xa tests. She will look for signs of bleeding, and, hopefully, notice any bleeding before it becomes serious. She is happy to go home (and to shop at Target before leaving Springfield). We are all happy to sleep in our own beds and eat real food.

Thank you for your prayers! Have a great weekend!

Written/Posted by Jenn.

Thursday, November 29, 2012

Awaiting More Information

A quick update with the only information we have:

The attending physician and three residents visited Mom this afternoon. They think that the bleeding may be caused by her increased Lovenox dosage which thins her blood. Thinner blood could make the thin linings in her body 'leak' blood a bit. If this is the case (and hopefully it is), it would be the absolute best case scenario.

Mom has not had any scans or scopes, and she probably won't. After missing a Lovenox injection last night and this morning, Mom gave herself one at 4 p.m. today. An Anti-Xa test will be performed at 8 tonight and again 4 hours after tomorrow morning's injection. The attending physician would like Mom to be observed at St. John's for 3 Lovenox injections. If that occurs, she will be in Springfield until tomorrow night or early Saturday morning.

We will know more after Dr. Goswami visits us tonight and the results of Mom's blood & Anti-Xa tests are available tomorrow. We are praying Dr. G. has more insight into what might be causing the bleeding, as he has more knowledge about Mom's blood issues than anyone. Donita visited again this afternoon for awhile. Love her.

Mom feels very well and is in good spirits. We've been walking the halls and even racing each other a bit. :)

Again, thank you for your prayers, and please keep them coming. We will update you tomorrow morning as soon as we have additional information.

Written/Posted by Jenn.

Back to Springfield

Yesterday evening, Mom called to say that she was spitting up blood clots and blood. I called Dr. Houston, and he suggested she go to the RMH Emergency Department right away to check her blood counts. I picked up Mom, and Pat, Samantha, and Chris met us at the hospital. They did a CBC and a chest-abdomen x-ray. Though the x-ray looked fine, the on-call doctor reported that it looked as though Mom had lost a unit or more of blood (later she said it could be up to 20%).  This is particularly alarming, as the amount of blood she spit up was very small compared to what she is thought to have lost. 

Due to her myriad blood issues, Mom was taken to St. John's Hospital in Springfield by ambulance. I was waiting in the room when she arrived at 3:20 a.m., and Pat was right behind her. She is on the oncology floor at St. John's, which is staffed by residents. Two residents have been in to see her since she arrived, and both have expressed their desire to order a CT. Unfortunately, any testing has to be approved by an attending physician. As a result, no tests have been ordered yet. Thus far, no one has any suggestions as to where the bleeding is coming from. 

Her hemoglobin and hematocrit are low but are being monitored closely. Her Anti-Xa test also came back very low. We are awaiting Dr. Goswami's arrival this afternoon in hopes he can provide some direction for the other doctors. Donita Schrey stopped by this morning, and, as always, her friendly face is a welcome addition to Mom's stays in Springfield. 

Really, we still don't have much news. We are hoping for a CT to be ordered soon. If the CT is inconclusive, they will likely do an endoscopy procedure later today. We will keep you updated. 

As always, your prayers, thoughts, and good vibes are appreciated.  

Written/Posted by Jenn.

Monday, November 26, 2012

Our Thanksgiving Weekend in Photos


JaJa, Amy, and Braeda at the Christmas Parade

JaJa blowing bubbles for Braeda
Braeda loving the bubbles

Kate and Amy

Mimi and Kinnick

Leslie & McKenna
Mom and Amy

Samantha and Chris
JaJa playing in the leaves with Braeda and McKenna
Our Family (missing Tom)

Back: Rhett, Leslie, Kinnick, Bartley, Jennifer, Kate, Samantha, Chris, Amy, Rylan
Front: McKenna, Pat, Mom, Braeda
Mom and her girls

Leslie, Jennifer, Kate, Mimi, Samantha, and Amy with Pat and Mom

We had a lovely Thanksgiving at Suntone Beach in Southern Illinois (there isn't really a beach, do not be confused). I'm sure Mom will post about it in the next few days. We hope you and your family had a wonderful holiday, as well!

Written/Posted by Jenn.

Wednesday, November 14, 2012

A Little Disappointed

Well, Pat and I made the trip to St. Louis and I guess I thought they were going to offer a magic drug or something. My hopes were way too high. Yes, there are clinical trials for BOTH of my mutations and when we get down to fewer options, we will consider them if I am still healthy enough AND they still want me. They consider me a good choice of human rats (they didn't actually call me a human rat but you are basically one) as most are not as healthy as me with intra hepatic cholangiocarcinoma. I am joining the gym with a couple of my girls as I just don't think I should breathe this cold air.
As my daughter Amy stated to me with tears rolling down my face.....there is only ONE Great Physician and he will guide me to where I need to be on this Journey. I haven't lost faith... God is with me....I just can't hardly stomach the idea of leaving my family.

We did really good selling our winter/Christmas cards and we are going to have to go get them from the banks to sell the rest of them....I just don't want to order anymore. We started with 200 sets. Thanks to all who supported the cause and an EXTRA thanks to Debbie Weiler for sitting out there for two days with me. I even had a special visitor show up (Donita Schrey) who has been there through it all when I have been in Springfield.

I mostly feel ok.....I am in bed a little earlier than usual but I just figure my body needs the rest. This chemo by far is the hardest on my body....but my kidneys and liver are still showing good numbers. I just feel God has a plan for is just not time to grow daisies on my head yet!!  :-)

As we drove back from St. Louis and I had a pity party for myself about all the way home....when we got out of the car, I looked up at the sky. There were as many stars in the sky compared to how much interest Mitt Romney makes in off shore accounts......ahhh ahhhh ahhh!!! and I just stood there in amazement at all the stars. I thanked God for letting me just stand there and enjoy the beauty of them.

As we have Thanksgiving coming upon us, I think we all need to give thanks for things/people maybe not as well off as us...maybe buy a turkey for a needy family should be on your list for the store..... we take so much  for granted.  I think it is easy to take God for granted if you are not careful. He is ALWAYS there but giving thanks is SO important.

May you all be blessed this Thanksgiving!!



Thursday, November 8, 2012

Crazy busy right now

We have been selling bundles of cards faster than we can make them....YEAH!  We will be at The Holiday (this weekend) if anyone is interested in taking a look at them or purchasing them. Remember all funds go to The American Cancer Society and The Cholangiocarcinoma Foundation. We are selling them to support our Suntone Beach Survivors Walk & Roll team.
I started painting after I had my stroke and just kinda played with it. Then I got the idea to paint holiday note cards to use as a fundraiser for our team. They are by no way perfect and I have NOT taken any painting classes. I believe God just put a paint brush in my hand and whatever my hand draws is what I paint...we will try and see if they will sell. He knew I didn't have time before the stroke!! It gives me a certain "Zen" when I paint... a calmness I have never had before. I was always too busy going 110 miles an hour. Boy has that changed!!
I had chemo Monday and my white count was down some...due to a bug the previous weekend probably. I asked my doctor if I was going to die next year and he told me I wasn't going to die....I informed him I was told differently. He just says it's not happening for along time.....I have faith that he knows what he is talking about. I just feel a calmness when I think about dying....I am not going to worry over it....then I would be losing precious time I could be spending with family and thanking God for each and every day he gives me on this earth!!
My chemo makes me stay up ALL night on Monday on Tuesday of this week, I worked the election with no sleep. I slept half way okay on Tuesday evening/night but have worked the rest of the week so far at ERBA.
I make my trip to St. Louis Monday although my doctor in Effingham says my chemo has me so stable right now that he hates me to do the clinical trial now. The doctor in Houston also agrees it is too soon for me to start the trial. I guess that is a good thing.
I feel good....people say I look good (negotiable)....and I just feel like I am being led by a higher power on a daily basis. Again, I feel like faith is leading the way! AMEN!!
May you all have a blessed weekend and enjoy each minute of the day!!



Monday, November 5, 2012

Get Your Christmas Notecards!

If you are interested in purchasing a package of Christmas notecards painted by Mom, you may get them at any of the banks in Olney or by emailing!

Written/Posted by Jenn.