Thursday, October 28, 2010

Angel

God welcomed Donna with open arms early this afternoon. She will be missed so much, but she will forever be with us.

Thank you so much for your many prayers.

Memorial information will follow.

Tuesday, October 26, 2010

Jellybeans

For some reason, I have a song from what seems like another lifetime stuck in my head. So I sang to my mom and kissed her goodnight. She can't open her eyes without a lot of struggle. She can't speak without pain. But she still returns a kiss with the same love she has always given. Thank God for mom kisses.

I wish you a jellybean to chew upon,
I wish you a hatpin to keep your hat on,
I wish you love your whole life through,
God bless you, and keep you,
Just because you’re you.

I wish you grass to tickle your toes.
I wish you sunshine to freckle your nose.
I wish you love your whole life through,
God bless you, and keep you,
Just because you’re you.

I want to be there when God takes your hand
And leads you to the promised land.
I want to be there when He says to you,
“I’ll bless you and keep you, just because you’re you.”

Transfer of Care

I've just finished the paperwork to bring on Community Hospice of Texas (CHOT) as the provider of inpatient hospice care for Donna. This was the best option as they will be providing care at St Paul where were already are. The same nurses, techs, and doctors will still be on board, but they will be supplemented with additional support from CHOT. Also, we will not need to transport Donna, which can be very uncomfortable.

Donna is still refusing to take oral medications or drink any water. We are looking at adding continuous flow pain medication to help regulate the peaks and valleys in pain management. Donna is not talking today, but still seems to be listening occasionally. I know she is still in there, she's just too tired to talk. She is resting well. There have been moments of anxiety on her face, but they quickly melt back into calmness.

This afternoon we read poetry and listened to baroque music. Rhea came to visit late afternoon and talk with Donna and I. We had a nice visit. Her presence has been an immense support.

Please keep Donna in your thoughts and help us surround her with love.

Monday, October 25, 2010

Strength

"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind."
-2 Timothy 1:7

It is difficult not to be afraid.

I am a mess. I've never loved anyone more than I love my mom. I've never had a better friend or a stronger ally. I've never second guessed myself so much or played the what if game so intensely. I've never considered that she would not be here, which is my mistake.

Donna has had a lot of visitors over the past few days. It means a lot to me that so many people have been able to get here.

We are going to stop IV fluids today. We have stopped the antibiotics and the medications she was taking prior to all this. We are giving her pain medications and some steroids to prevent some of the swelling. We are evaluating where to go from here. Days, weeks... no one can really say what we have, but she is very sad today. My heart is breaking for her... and for my family... and for myself. I want so badly for her to feel calm and loved.

Keep her in your thoughts. I want only the best for her and every voice or prayer on her side must help in some way.

Saturday, October 23, 2010

Saturday Has Been... Ugh

But thankfully, there has been a lot of company to keep everyone's mind busy.

This morning, Donna was very drowsy and difficult to wake. They feared she had a stroke during the night. They took her down to CT, but there was no evidence of a stroke/bleed/etc. There are flares on the scan though that show a further progression of the lymphoma. She still has the infection that the doctors identified a few days ago as well.

The option to do CHOP chemotherapy has been taken off the table due to the change in her status. We are going to come together as a team on Monday and reevaluate the situation. Everything about this cancer is more aggressive than any of our doctors have ever seen. They all seem as surprised as us with the rate at which it has and is progressing.

We have such a great medical team in our corner. The internists, neurologists, hematology-oncologists, gastroenterologists, nurses, techs, etc have all been so great. Please add Donna's tech Tonja to your list of thanks yous when you pray. She treats Donna with such care and love. She tears up when she does things that are painful to Donna and spends time talking with her about school, families, work, and life in general. She is amazingly strong and compassionate.

We had another lovely visit today with Rhea and Robert. They brought Donna some more peanut brittle (and didn't skimp- they brought her some pecan brittle too). Donna's mom, brothers, and sisters are on their way here tonight and should be here soon.

I will do my best to keep everyone updated as much as possible.

Friday, October 22, 2010

CHOP Chemotherapy

With the diagnosis of ALCL ALK-, we have decided on a course of action. ALCL ALK- is a very aggressive non-Hodgkin lymphoma. It has manifested in her abdomen, lungs, and brain which makes this a very difficult battle.

Donna is not strong enough right now to undergo the most aggressive treatment, but she is still ready to fight. We have decided to start CHOP Chemotherapy to begin fighting the lymphoma in her body while we work up her strength to battle the lymphoma in her brain. The less aggressive treatment that Donna can handle right now is not strong enough to cross the blood-brain barrier so we will continue to monitor changes in the brain and spinal fluid closely. I believe we will be starting CHOP as early as tomorrow since the sense of urgency is quite high.

Today, we have started another round of IV antibiotics. Donna has an infection from a combination of all the blood work, open wounds, compromised immune system, and time in the hospital. The physician's feel confident that the antibiotics should begin working late today.

Cy's visit yesterday evening really lifted Donna's spirits. Michel is here today to help me with decisions and a course of action. He arrived last night and it has been welcome support. Jerry will be here in a few hours as well.

We need to surround Donna with as much support as possible right now. Mentally, we need to keep her as strong and positive as possible for the battle ahead.

Anaplastic Large Cell Lymphoma

There is finally a name to go with what Donna has been experiencing, ALK-negative anaplastic large cell lymphoma.

We met with the hematology-oncology team today and we have a lot to think about. We will sit down with them tomorrow and decide on a plan.

Michel (Donna's son) is on his way to Dallas now and Jerry (Donna's ex-husband) should be here tomorrow.

Wednesday, October 20, 2010

Day 67

Hard to believe... it's been 67 days since Donna first went to the emergency room in Lampasas. It's been a long journey so far, but I have a renewed determination and I'm dragging Donna along whether she likes it or not. I got that trait from her anyway, so she should understand.

Donna is running a low grade fever and has been all day. Her blood pressure has dropped to levels we had no seen since just after the laparoscopic biopsies done by the urology team. They did an upper GI this morning to see if they could identify what was causing the pain in her stomach, but were not able to find anything. They did another MRI or her head as well. It is clear that she is in pain, but unclear as to how to remedy the situation.

This evening, we haven't been able to get ahead of the pain. She has a fresh bruise by her left ear and a swollen mass that has formed on the left side of her neck just below the ear. There is not any pain associated with the mass, but I pointed it out to the nurse just in case. The hospitalist came in within ten minutes and now we are waiting for the rad techs to take Donna down to have an emergency CT of the head and neck. They have given Donna some anti-nausea meds to help with the effects of the contrast for the CT scan.

It has been a long day. Thankfully with all the activity, Donna should sleep very well tonight.

I will let everyone know what we find out about the new mass as soon as we have word.

One last thing- say a little prayer of thanks for Marlon Cortez. He is Donna's nurse tonight (and last night). He really takes good care of her. He is kind and respectful- one of the best we've had throughout all of this.

Tuesday, October 19, 2010

Sorry for the Delay

So much seems to have happened, but when I try to sum it all up with the one thing we are looking for, I can't.

Donna's friends Rhea and MJ stopped by to see her this weekend. It was a nice break and really lifted her spirits. So far as company is concerned, right now- the more the merrier. If that changes, I will let you know. Until then,please feel free to come by and say hello.

The incision the runs from ear to ear like a headband is healing nicely. If she let's me I'll post a picture (proof that she looks better than some of the updates let on). Occupational therapy and speech therapy are still working with Donna to get her up and running.

This weekend they did another round of CTs and plain film x-rays. They have identified something in her chest, but again, they do not know what they are looking at. The new internist/hospitalist thinks we may be looking at lymphoma. With the number of specialist who have ruled out cancer, I'm not sure how to take the latest news.

Since I have another midterm tomorrow and cannot miss class, I have requested a call from the doctor. The nurses let me know he would call tomorrow while he is making rounds. I have a number of questions for him. The biggest question, if he thinks it is lymphoma, what has he seen that no one else did. Next question, what are we going to do moving forward...

Thursday, October 14, 2010

New Hospital

I came to the hospital late tonight because I had a final for stats and meeting at school. When I called Judy to check in on her and mom, she let me know that they had moved to St. Paul's Hospital, just a block up the road from Zale-Lipshy. Donna is still in the UT Southwestern system, just in a different facility.

The team of specialists working with my mom did not feel the surgical oncology/urology consults that had been discussed with us yesterday by infectious disease were necessary. They took Donna for another ultrasound to look for any other blood clots.

After the ultrasound, there was not much word from the doctors... until the news that Donna was being transferred.

Donna arrived at St. Paul under a new admitting physician (a nephrologist) with a new primary on the case (a hospitalist). Donna did not have any of her pain meds and the hospitalist was no where to be found.

Sometime after 7pm, the admitting physician came in to go over some things with Donna. Same questions we've answered at every other hospital. The nephrologist said that he would be meeting with the doctors from Zale tomorrow to go over her case. Then he called her unique.

I'm over it. Please stop referring to her as "unique" and "an interesting case." She is my mom and my best friend, not an interesting case to get someone published in a medical journal.

Bumps in the Road

During the CT scan yesterday, the doctors felt that Donna has some tissue deterioration. Upon closer look, they found a blood clot as well. This morning they corrected he PICC line (the old one had become blocked) and attempted to insert a filter endovascularly to block the clot from her lungs, heart, and brain. Due to the size of the mass in her abdomen, the filter would not open properly.

Donna is experiencing more intense pain in her abdomen. The intensifying pain is a definite concern for the family as well as the doctors.

Teams from infectious disease and neurosurgery have been by this evening to talk with us about how she is healing from the brain surgery, how the medications are working in regard to the mass(es), and what our next steps are.

Neurosurgery feels positive about the progress Donna is making. We are hopeful that she will continue to heal and regain her strength. She was very lucid today and able to move her left arm and leg with little effort. Please keep Drs. Mickey, Lee, Beshay, and Flores in your thoughts. They are an amazing team and we have become very fond of them. They not only have amazing skills as physicians, but they are amazing men with obvious concern for their patients (and the families).

Infectious disease has requested that radiology do a comparison study using the CT scan from yesterday and the CT scan from our original admission into Zale-Lipshy. There is some concern about the abdominal mass(es) and whether the medication we have been using is having a positive impact on the mass(es). The ID team will be consulting with urology and surgical oncology tomorrow after the results of the CT comparison are in hand. We hope to have some sort of plan tomorrow morning, but we are learning to be more patient as time goes by. Thankfully, we are very familiar with the urology team... and more importantly, they are very familiar with Donna.

MJ- Thank you for sending the letters from the students, mom really enjoyed the ones we read tonight.

Sara- Thank you for the lovely goodie basket. Mom has eaten some orange slices today and said they were the best tasting thing she has had in a while.

All- Thank you for your continued thoughts and prayers. Your support has helped us all stay strong.

Tuesday, October 12, 2010

Busy Day

There has been a steady stream of people in the room today... a stream that started at 6am (thanks Dr. Flores). Neurosurgery, infectious disease, internal medicine, nutrition, physical therapy, speech therapy, radiology... even maintenance stopped by to make sure her lights, doors, and plumbing was all in order.

They were able to get Donna in the shower which was tiring, but helped relax her a bit and allowed her to get some sleep.

She does not have much of an appetite, but Judy and I are working with her to get some Ensure in her system.

It looks like we will be here for another week or so before we move onto a rehabilitation floor. Donna is learning to use her left arm and leg again, but is making great progress!

We will get there slowly but surely.

Monday, October 11, 2010

Patience

"...strengthened with all power according to his glorious might so that you may have great endurance and patience..."
-Colossians 1:11

Donna is having some frustration tonight. She is very tired from a long day of working on speech and physical therapy. She is making such amazing progress, but cannot see the forest for the trees right now. It is very overwhelming at times, but she keeps moving forward. I'm lucky she is such a strong woman.

We have moved rooms again, but are still on the same floor. They felt it would be better to have Donna by the nurses station so she could be more closely monitored this evening. I am staying the night with her tonight and Judy's husband has come to help her with the shoulder and give her a break from the hospital.

Please continue to send your thoughts and prayers our direction. The next few days will not be easy ones for Donna or the family, but thanks to the doctors, hopefully the hard part is over. We will find out more after the CT scan (which was moved to tomorrow morning).

Out of ICU!

Donna moved out of ICU this afternoon. We are on the neurology floor at Zale-Lipshy now, so Donna is able to have visitors and flowers- she would love to see or here from you all!

Last night, Judy dislocated her shoulder and we got to see the inner workings of Parkland ER (so for those people keeping track, that's at least 7 hospitals for this bunch in the last 8 weeks!). She is doing well today- she is a total trooper!

Donna was able to eat a little for breakfast and lunch and is about to have another shake full of contrast for another CT scan. She has had speech therapy and physical therapy already today as well.

Things are still looking up and we just keep plugging along.

Keep Donna (and Judy) in your thoughts- they are tough ladies, but they can always use a little love.