Newfound Hope

First off, I would like to apologize for our lack of consistent posting. It seems as though we post only when Mom has doctor appointments. We hope to start posting more frequent updates.

Since Mom saw Dr. Goswami last week, she has continued to fight a fever. Dr. Houston started Mom on an antibiotic Monday. Thus far, it doesn't seem to be helping. The fever is low-grade, but is usually accompanied by a slight headache and increased heart rate. At this point, the cause is uncertain, so Mom is waiting it out.

This week, in three days, Mom gained 7 pounds. While the goal is for her to maintain or even gain weight, 7 pounds in three days is alarming. It has manifested itself in edema in her legs and lower back. Dr. Goswami thought it might be due to the large volume of water she's imbibing, so he suggested she cut back. Yesterday, she lost 1.25 pounds, but hasn't lost any weight today. Mom's struggle, at this point, is whether she should be up and moving (to help ward off clots) or sitting with her legs propped up. I think she's trying to do some combination of the two. The edema in her face and neck, which are thought to be a result of Cushing's from the steroids, has not improved. It will take some time for the steroids to leave her body, so we're hoping that in the next week, that  swelling dissipates.

Mom's blood sugar is FINALLY stabilizing. She hasn't had to give herself insulin for over a week now. This is great news, as preparing meals without carbohydrates is difficult.

Also good news, is that Mom's really feeling better. She has been painting a mailbox for Bartley and I, and finished it yesterday. She has been walking regularly down the driveway and back, and even went to Oblong with Samantha and Sarah for some shopping on Saturday. Any doubts that she may not have great short-term memory due to her brain hemorrhage have ceased. She is feeling and acting more like herself each day.

While Mom was in the hospital last time (about two weeks ago), we withheld some information from the blog. It is difficult to explain how hard it is to have exciting, hopeful news, only to realize shortly thereafter that whatever it was isn't going to happen or work out. The day that Mom was discharged from St. John's, Dr. Goswami came in and asked what was going on with her cancer, as he usually does. We explained that MD Anderson is very happy with the tumor's progress. It is stable, and is actually dying inside. He asked about a doctor at Barnes-Jewish in St. Louis that Mom had mentioned previously. The doctor's name is Dr. William Chapman, and he is known for doing resections and transplants on cholangiocarcinoma patients. Mom told Dr. Goswami that she had thought about calling him that day, but that we hadn't done it yet. Dr. Goswami looked at her for a moment, and then he said "Do you mind if I call him?". She, of course, didn't mind, and Dr. Goswami said he would put a call in.

Mom hadn't heard anything since, and, for fear of pestering, hadn't asked Dr. Goswami about it. Yesterday, Dr. Goswami called Mom at home. Dr. Chapman had returned his call. He told Dr. Goswami that although MD Anderson is very good at determining chemo and radiation regimens, he didn't agree with their general assessment of cholangiocarcinoma. He asked if Mom would be willing to see him on November 9th. :) I know that Mom was overwhelmed by the news, and I can say with a fair amount of certainty that tears of joy, hope, and excitement were shed yesterday by all who got her text. See the links below for more information on Dr. Chapman's cholangiocarcinoma success stories.

Obviously, nothing is certain at this point. We usually try to wait until we know if seemingly good news will pan out in the long run before we let everyone else know. However, with the prospect of a resection or transplant comes immense hope. We couldn't keep it to ourselves. Mom needs every prayer you've got from now until Wednesday morning. Patients who are eligible for these surgeries have to fit a large set of criteria. If you have read anything about cholangiocarcinoma, you know that a resection provides a lengthened survival rate and is better than only chemo/radiation. However, a transplant is the only real means of long-term survival.

Please pray, maybe even harder than ever, that Mom will be a candidate. Pray that Dr. Chapman will see how badly she needs a transplant and wants to live. Pray that if she is eligible for a transplant, that she is one of the 16,000 on the transplant list who receives a liver. Pray that she will finally have hope of living without a tumor, that she will be able to see McKenna and Braeda and know that she will watch them grow up, and that she will grow old, wrinkly, and gray.

Momma and Braeda enjoying an afternoon nap at home. 

Thank you, thank you, thank you for all of your prayers. Without your prayers and God, we know that she would not be here now. And as always, we are ever grateful to Dr. Goswami, who oftentimes is the reason we have hope at all.

http://newsblog.barnesjewish.org/tag/dr-william-chapman/
http://transplantblog.barnesjewish.org/tag/dr-william-chapman/

Written/Posted by Jenn

A Visit with Goswami

Mom had an appointment today at 12:15 with Dr. Goswami in Effingham for a checkup. Mom developed a rash on about Friday and she started running a slight temperature on Wednesday. She took some Tylenol, which reduced her temperature some. She also has had tachycardia (fast heart beat).

Dr. Goswami said he is unsure why she had a rash on her upper legs and running a temperature, so he ordered for blood work to check her white blood cell count. Blood work came back fine, and her platelets are now at 115,000. He said that a fever can cause tachycardia. Dr. Goswami told her to drink plenty of water, and monitor her pulse and temperature over the weekend, and then call him on Monday to let him know what her temperature and pulse rate is at that point.

Mom asked Dr. Goswami why she was still so weak, and he said maybe it was because she just came off of the steroids, which is good news.

Mom's been out walking and having coffee on the porch all week, feeling much better. Keep the prayers coming!

Written/posted by Samantha

Bound for Home

Donita stopped by Mom's room this morning. She is a constant breath of fresh air, and we are grateful to have her knowledge and friendship in our lives.

Dr. Goswami is back from vacation today and stopped by a bit ago. Mom's inferior vena cava, from the bottom of her xiphoid process (that little hangy-down between your ribs) to the top of her pelvis is 100% accluded. No blood or fluid is moving anywhere. Dr. Goswami says that the clot formed so slowly that Mom's body formed new/enlarged old vessels to return the blood and fluid, which is why she didn't have any edema in her legs. It is amazing what the human body can do - it sensed it's inability to return blood to the heart and formed new ways to get it there.

At this point, the benefits of doing surgery and removing the clots do not outweigh the risks. Many people live their entire lives with clots in their lower body (though most of them are in their legs). Mom will continue to give herself Lovenox (blood thinner) shots twice a day, but at a lower dose than before. She will go to Effingham or Olney for periodic blood tests (Anti-Xa) to monitor clotting factor ten. Hopefully, this will allow the doctors to keep her blood in a safe range of not too thin and not too thick.

She can resume her chemo whenever she's ready. If it starts causing more problems with her platelets (which are up to 108,000 today :), then she and Dr. Goswami will reassess.

Mom is headed home today. They should have discharge orders finished very soon. I know she is happy to go home, but still apprehensive. She has a list of symptoms to watch for that may indicate clotting/bleeding, so hopefully that will help catch these episodes quicker.

Thank you again for your prayers, thoughts, and good vibes. Please continue them as Mom regains her strength and sense of normalcy  in her life. We are so thankful for Dr. Goswami. His compassion and genuine care for Mom give her new hope each time she sees him.

Written/Posted by Jenn.

Beautiful Day in the Neighborhood

Mom is doing well today. Her platelets are up to 89,000 and her blood sugar seems to be holding. It's still higher than normal, but that's expected. Her last dose of Dexamethasone will be tomorrow morning at 6:30, so we expect her glucose levels to continue improving.

She had a tiny ping of pain near her left temple yesterday morning, and a few more this morning. Dr. Shayuk felt a CT scan of her head was needed. We haven't officially heard the results from a doctor, but since no one came in to tell us, we finally asked a nurse. The results are negative, indicating no clotting or bleeding in her brain.

Dr. Goswami will be in tomorrow, and there's a good chance Mom will be going home soon. It will take some time for the clots in her abdomen/pelvis to be reabsorbed, but, at this point, the hospital isn't doing anything that she can't do at home. Mom is understandably apprehensive about going home. We are going to discuss a plan for managing her chronic thrombocytopenia (low platelet count) with Dr. Goswami in an effort to avoid these hospital stays.

Mom has been up and walking the halls since yesterday afternoon. Today, we walked outside and enjoyed the fresh air and warm temperatures for awhile. It was a beautiful day in Springfield.

Continue to pray for Mom and her team of doctors and nurses. We are so thankful for your prayers and good thoughts. Obviously, they are working. :)

Written/Posted by Jenn.

Up & Walking!

Dr. Mishkal and Dr. Shayuk were in yesterday and today. Mom's platelets fell to 74,000 today. Her sugar is getting SO much better. No insulin was needed this morning!

Dr. Goswami ordered an antibody test to see if Mom had heparin induced thromocytopenia. In an effort to not sound extremely nerdy, I will just say that Mom doesn't have the antibody so it can be assumed that her low platelets and brain bleed were not directly attributed to the Lovenox shots. Dr. Mishkal discontinued the Bivalirudin about 30 minutes ago. Starting today, Mom will take low-dose Lovenox shots, twice a day.

It is likely that the swelling in her face is Cushing's Syndrome, which is caused by steroids. She has the characteristic 'moon-face' and a 'buffalo hump' on the back of her neck. All of this should subside in three to four weeks, since Mom's last Dexamethazone pills are tomorrow.

Bill and Deb Weiler drove up to see Mom yesterday. Mimi and Sarah drove up this morning, and Amy and Rylan will be here this afternoon. Though sometimtes tiring, the company of people definitely provides a break from the monotony of the hospital.

Mom's spirits and mood, in general, are much improved, even in the last 24 hours. She's still quite weak, but she and I walked around the neuro/cardiac wing twice this morning (about a quarter mile). All is going well. We are looking forward to Monday when Dr. Goswami gets back.

Written/Posted by Jenn.

A Quiet Morning

It's been a quiet, yet productive, morning in Springfield. Mom bathed and washed her hair. Dr. Shayuk (internal medicine) was in, as was Dr. Mink (oncology). The report from Mom's Echo yesterday showed no blood clots in her heart. Her platelets jumped from 66,000 yesterday to 79,000 this morning. :) And her glucose was lower than usual before breakfast.

The PTT test this morning had favorable results, so her Bivalirudin has been increased. They will do another PTT in two hours. Dr. Mishkal will be Dr. Goswami's temporary replacement today. He should be in soon.

I would like to reiterate that Mom's cancer is stable and has been responding well to treatment. The issues she is dealing with now will probably have to be dealt with indefinitely. Because of her cholangiocarcinoma, her clotting factors are unstable. Until the cancer is gone, she will have to battle clotting/thinning of her blood. :(

Thank you for your prayers, thoughts, and good vibes. Mom needs them and truly appreciates them.
Please continue to pray, think good thoughts, and send good vibes.

Written/Posted by Jenn.

Decision Time

Dr. Goswami and Donita Schrey were in before noon to see Mom. CT scans from yesterday showed that the previous clot and hemorrhage in her brain are stable. Dr. Russell, her neurologist, cleared Dr. Goswami to do whatever he thought was needed. The scans also showed the large IVC clot in her abdomen and pelvis and a small clot in her lung. The clot in her lung was, most likely, a pulmonary embolism.  Dr. Goswami ordered an echocardiogram today to be sure no clots have made it to her heart or arterial system. We do not have those results yet.  Her platelets dropped from 68,000 yesterday to 66,000 today. Her sugar seems to be improving (which Samantha attributes to the unavailability of Milano cookies in the hospital :).

Dr. Goswami thought a long while today about his plan for Mom. Ultimately, he decided to start an IV drip of Bivalirudin (Andgiomax). It is a direct thrombin inhibitor, whereas heparin (what he used last time) is an indirect thrombin inhibitor. Bivalirudin should not affect her platelets as the heparin did. The obvious risk is that thinning her blood could cause another hemorrhage in her brain. It could also cause more pulmonary embolisms.

They started the Bivalirudin about an hour ago. Dr. Goswami has ordered that Mom have a PTT in four hours to check her blood's ability to clot. They will call him with results after the test tonight, and he will adjust the dosage of Bivalirudin appropriately. Donita, the nurses, and Dr. Russell will keep a close eye on Mom. Hopefully if her brain does start bleeding, they will catch it very early. At this point, the risk of hemorrhage nearly equals the risk of the clots; benefits of one mean risks of another. Six of one; half dozen of another.

Please pray for Mom's continued safety and recovery. Pray that her entire team of doctors and nurses are cognizant and diligent over the course of the coming days. She needs everyone to be on their 'A-game'.

Most notes taken by Samantha.
Written/Posted by Jenn.