New Diagnosis: Faith Hope and Love for Mom

Thanks Lainy. Truth be known, I find it to be more of the other way around. As I’ve said before, all of you are a Godsend.

*** Update, Wedesday, June 10, 2015 at 10:00 at night ***

Good News! Mom was taken to the ER early this afternoon. After being triaged and waiting, a room became available for her to see the attending physician in the ER.

He started her on an IV of fluids and antibiotics. And ordered a CT Scan. Both were done in less time than their ER wait! Nonetheless, during that time she took in over 1 liter of fluids and 750 mL of antibiotics via the IV. Looks like she was dehydrated?

Within an hour of having the CT scan, another doc came by and said that she was admitting mom to the hospital. That her case was very complicated, and that the biliary doc experts will take over tomorrow. They will probably want to do a MRI before proceeding.

So many people are praying for her, and I know the door is opening. Bottom line … if there is no curative treatment, I now feel that we are on the right path for a favorable palliative treatment plan. But who’s to say that we can’t have both, right?!

Optimism is the only choice. Other good news is that I spoke with Alex with Dr. Chapman’s office. She has received all of the necessary medical records, and the radiological team will convene to make a report on mom’s case. Dr. Chapman will then review and make a decision on whether or not he can help mom. Keeping fingers crossed that this will be yet another open door that will blow open and fall off the hinges. She said they would then get her transported up to Saint Louis. I know these are all small miracles in the grand scheme of things, but they are miracles and great stepping stones nonetheless.

Mom is in good spirits. Seems to be better than now that she has fluids. My hope is that she rests very comfortably tonight, and is able to get a great night’s rest.

Thanks for listening.

Best,

Jason

Thanks Marion.

We are all staying strong. It’s not just me, there’s also my sister, my aunt, and so many others that are searching for ways to help mom. Most importantly, God is in control and is opening the right door.

I’m in Dallas helping my grandmother as she had breast cancer surgery the week after my mother found out that she had a mass on her liver (a little over a month ago). My sister is holding down the fort in Augusta with mom. Grandmother is on the mend. Now it’s time to get mom on the mend as well.

I’m contacting Dr. Chapman, as well as her PCP and others to see what can be done asap. She needs to have biliary drainage in order to relieve a lot of her symptoms and have a lot better quality of life. Hopefully this in turn will give her the fighting attitude that we all know she has to endure this roller coaster journey and be a survivor for years to come.

Thanks again.

Best,

Jason

Thanks Marion for the kind words. I have not been in contact with her PCP. I will do that asap. We all have trust in God and know that He is opening a door.

As in life, sometimes I have the tendancy to read too much into all of the different posts that I read throughout this discussion board. I tend to analyze and weigh were my mom is in her journey compared to many of those on this board, and where they were shortly after diagnosis. It seems a lot of the one’s on here that had ulcerative colitis went rather quickly after diagnosis. I hope and pray that is not the journey for my mom.

I’m a secondary science teacher up in Alaska, so I am well versed in the scientific side of things. Obviously from a non- M.D. perspective. But I still tend to analyze it too much and my science background does not help things as we tend to question everything. The big “what-if” is the unknown answer to the question of “What’s next”. If that makes any sense.

I referred to her as “still awake” because in a lot of the posts several people said that they experienced no symptoms at all for quite some time after diagnosis. I try to look at the common denominators. Especially for the one’s that could not even get out of bed, did not eat for days and had no strength, and those who simply slept.

She is still eating everyday. Small meals, but energy nonetheless. She is drinking fluids so she is dehydrated. She uses the bathroom on her own and showers on her own.

She is just extremely fatigued. Although she moves from the bed to the couch. She’s hard press to do much more. She’s told my sister that it “hurts to even move”. That fatigue along with the jaundice and pain is our primary concern. When I refer to “still awake”, I am referring to her not sleeping the entire day and night. We just don’t know why the diagnosing oncologist said that a stent could not be done to relieve the bile backing up into the blood. This is what causes the jaundice causing the bilirubin to go up, and her jaundice is now turning from yellow to green. I have not seen any mention of that on this site. Has anyone heard of that before?

I know it’s just a waiting game at this point tonight. We are all just on pins and needles as many of you have been throughout the years. This journey is definitely a roller coaster ride. As I’ve said before, I simply don’t want mom to suffer or be in pain. I’ve heard that once the stents are in place, the jaundice and a lot of the other symptoms quickly subside within a day or two. I know this would give her much more quality of life.

I feel that I’m rambling, so I’ll stop. Please forgive me for being so long winded. I’m just trying to breathe new life into this terrible, roller coaster ride of a journey. With so many unknowns, I just don’t know what to expect, but truly thank you all for the infinite wisdom and hope that you give to everyone. There are so many of you that are simply an inspiration.

Best,

Jason

*** Update, Tuesday June 9, 2015 ***

I contacted Dr. Chapman and spoke with Alex. She is wonderful. We have made contact with all of those who saw her in Augusta to get them to fax their records to Alex so that Dr. Chapman can review them.

Mom has had ulcerative colitis since childhood, she has a j pouch, and no gall bladder.

Fingers are crossed that Dr. Chapman will open up the door that my mom so desperately needs.
She is extremely fatigued, and her jaundice is turning from yellow to green. She still is awake and has 100% cognitive capacity.

We are all just hoping and praying that tomorrow will be the day that the ball starts moving even faster to get her on a treatment plan.

I am also waiting on MD Anderson to call us back. They are in the process of also getting her medical records. Does anyone have any other ideas? We are trying to take every approach that we can.

Thanks again for your continued guidance and direction. All of your suggestions have been a God send.

Best,

Jason