Wednesday, April 29, 2009

Conference Call

It's that time again! I wanted to try for Thursday evening at 7:30 Central time.
If that does NOT work with you, give me a call and we can figure some other time.

The number is 800-651-1252

Talk to you then :)

Tuesday, April 28, 2009


Melissa has obtained the correct ordering format from a medical company called Apria (1-866-244-1230). She is giving them her credit card # as a backup in case the insurance does not cover the Ensure purchases. We feel 99.9% positive that this will be covered by Medicare. Dad smartly kept his past Ensure purchase receipts and we will be submitting those for reimbursement.
The nurse Minoo will be going to Dad's apartment again to check the wound and also verify Dad's overall health and progress. She was there yesterday too.
Most importantly, we are submitting the application for Medicaid today. We had to wait for Dad to get his Ameritrade account below $2000. That officially occurred yesterday.

More on bills later.

Monday, April 27, 2009

Update on Nursing and Conference Call

I can do a call anytime this week. Let me know the best time for you other bloggers (this portion is from Steven).

Here is some dialogue from Melissa to Dad today:

John you have to keep your phone on. If you need me to assist with
some of this stuff then I need to be able to reach you.

The first nurse, Minoo, that came out has left you a message. She is
going to come out tomorrow at 2pm. If you would rather have the second
nurse Julie come out then I need to call them and let them know. We
just need one of them to come out to check out the drainage.

I left a message for Dr Kirbys nurse, with what I need faxed to me (
History and Physical & script for Ensure 5 cans daily). If you don't
mind telling him that he needs to fax this info to me so I can take
care of this. Please leave his nurse a message so we can get this done
ASAP.972-867-3577. My fax number is 479-463-4499 and they must put
Attention Melissa. There is a good chance that you won't get
reimbursed for the Ensure you already bought but the sooner I get all
this stuff the sooner we can order it.

I also need a copy of the front and back of your secondary insurance.
I have a copy of your medicare but they need this for billing purposes.
Fax it to : (479-463-4499) Att:Melissa

What if your height and weight?

Please , please lets get this and get it ordered so you don't have to
pay anymore....


phone call

I was wondering if we could all get together this week for a tele-conference. Let me know what days are good and we can get it scheduled. I think it would be good to talk about some of the financial issues.

Thursday, April 23, 2009

Dr. Kirby's Review

As you know, Dad had an appt. with Dr. Kirby on Tues. which was a follow-up to his release from the hospital.

Dr. Kirby thought Dad looked "sturdy and great" for his week at home. He remarked that his physical exam was "stable" and that Dad should be feeling better and better in the weeks to come.

Dr. Kirby is concerned about Dad's neck; however, he thinks the mass is smaller than it was. He mentioned that it could be scar tissue, but due to inflammation he cannot do a PET scan until 5-6 weeks of healing. Otherwise, it would be hard to intrepret the scans. Dr. Kirby says he has no idea what the base tongue cancer looks like until the scans are done, too.

According to Dr. Kirby we can be looking forward to analyzing the following:

1. Pet Scan is either; Normal or Abnormal
2 Whether or not the disease is still left/what is left?
3. Whether Dad is a candidate for a radical surgery or not? (age is a factor)

Our next step is a scheduled visit with Dr. Kirby and Dr. Greenberg (radiologist)in May. I will plan on being at that appt. with Dad to determine when the scans will take place. Dr. Kirby would also like Dad to have an appt. with his ENT (ear,nose &throat- Dr. Truelson) in the same time frame as the scans.

If you have any questions, please let me know!


Tuesday, April 21, 2009

low man on the totem pole

Dad has an appointment with Dr. Kirby today at 11:15. I called and asked Dad if he would put me on the contact list. He told me that they are pretty much talking specifically with Tracy which is fine but, kind of made me feel out of the loop.

So, Tracy when you get a chance can you call their office and get an update on Dad's progress and what was accomplished at this appt?


Friday, April 17, 2009

Veritas Home Health 1-972-519-0308

Today I spoke with your dad's nurse, Minoo. She went to see your dad on Wed. and will see him next Monday. Her plan is to see your dad weekly for 1-2 more weeks. While she was there she witnessed him doing his feeding. She said that he was doing it correctly. He talked about feeling confident that he is able to handle the dressing changes around the incision. He didn't want her to look under the dressing. I encouraged her to see if your dad will allow her to check it out and make sure there is no infection. God forbid there are issues like he had with the first tube. I also asked her to reiterate the importance of maintaining the proper nutition. She mentioned that your dad seems confident in what he is doing. Hopefully this is the case. She will weigh him per my request, at her next visits. Minoo did mention to me that he talked about being upset about the cancer diagnosis, which is natural. She did ask about an antidepessant because he does seem sad. I informed her that he got 1 prescription filled in Oct and the doctor wrote a new prescription in December for an anti-depressant that he never got filled. She thought it might be good for him to be on something. She will try to discuss this with him during there next meeting. She said she will contact us if anything comes up that needs to be addressed.

Thursday, April 16, 2009

Stuart we need your expertise....

I have been thinking a lot about having a hired caregiver come by weekly for the next 2 months. Does anyone have any thoughts about this? The lady Janet that I spoke with has a lot of experience and could help your dad with organization, cleaning and laundry. Your dad is not able to afford this so it would be up to all of us. Janet has a 4 hour minimium at $12 an hour. If all the kids would commit to $100 that would cover 2 months.

This is a very critical time for your dad and this may prevent another hospitalization. I know Bobbie is very involved but I think this may take some pressure off of her.

So I am asking Stuart to assess your dads situation when you see him on Sunday. He has been there less than a week. Steven organized and cleaned when he was in town so things should be pretty orderly. Don't just take your dads word for it because he will tell you "everything is just fine". I sure hope it is but we do need to be on our toes.

Any thoughts?


Wednesday, April 15, 2009


I spoke to Dad very briefly on the phone. De was back in his apartment. Said he would call back but didn't. I'll ring him tomorrow.

Told him on Tuesday, that I would visit him Sunday at his apartment.


Authorized user

I cannot access Dad's electric account without his consent. I could not even talk with a supervisor. Do you think I should ask Dad to call and set this up?


Update on Dad 4-15

Dad called me this morning at 8am. He is still having a hard time talking. Dad said it will be 3 months before they know his exact condition.

Monday, April 13, 2009

Discharge likely for Tuesday 4/14/09

I talked to your dad tonight and it sounds as if he is going to be discharged back to his apartment tomorrow after his radiation.He sounds anxious to return home.He did say that he is not eligible for rehab since he is so independent.His nurse mentioned too that he is doing great bathing himself, dressing etc. so he doesn't seem to need rehab.I mentioned that the family is very worried about his nutritional status and that is one of our biggest concerns.Our goal should be to follow closely with the home care nurse etc to make sure he is doing well from a nutritional standpoint. We are trying to prevent any returning trips back into the hospital.

We do have a ladys name that is able to provide home caregiving(info in a previous blog) so if we need to have her come in to check on him that is an option.This would be private pay.Home care will be covered by medicare and they will send out a nurse no more than once daily and less as the weeks go by.

Your dad sounded pretty good tonight and was actually eating some chicken noodle soup.Phone calls,letters(sent to Bobbie since his mail is coming here)and visits are what he needs right now.

Tracy any info you can find out about the upcoming appointments would be helpful.

Talk to you all later.

Sunday, April 12, 2009

Easter Sunday

The whole Miller family descended on Dad today from 12 til 2:00 p.m. He was sitting in his chair working on his computer. He asked me to help him open the phone list page that Steven e-mailed to him earlier. We opened it and he was satisfied; however, we didn't have a way to print it. Later, I found out that perhaps (via the BLOG) that Bobbie was printing it? He had not seen Bobbie yet today.

When I noticed it was 12:30 p.m., I asked him if he had had lunch? He had not, but said he was due for a feeding. So, we whipped out the goods and he held the syringe while I poured and poured his happy meal. It's very easy to do with a partner. He is going to have to be super organized to set up all the supplies before he starts doing this by himself full-time. A while later, a nurse who is overseeing Dad's tube/feeding came in to give dad his "lunch" and was excited that he had already had it.

In addition to the tube feeding, Dad is encouraged to try and eat from the menu as often as he can tolerate. He has a "soft" foods menu available. He informed me that he had potato soup and that was okay. He tried meatloaf and asparagus last night and couldn't eat any of it. I couldn't believe he even tried something so difficult right off the bat. That is why I seriously am concerned about the choices that Dad makes on his own. I got out the menu and showed him the mashed potatoes, sweet mashed potatoes, pears, eggs and soups that were more of a "soft" option and easier on his throat.

Meredith and Grant took him for a short walk down the halls and he's moving fine. It always perplexes me that he never wants to walk for very long or far? He informed me that "someone", perhaps a nurse,told him he was perfectly fine to by-pass the skilled nursing facility and go home, ie: he can walk, go to the bathroom, bathe himself, etc. He also told me yesterday that he was not doing any physical therapy since he was fine in that department too according to the PT person?? He asked me what I thought about a nursing facility and I was ALL PRO nursing facility.

Dr. Kirby was on call this weekend and unfortunately, I missed seeing him before we left. I am going to be in touch with Dr. Kirby tomorrow. Dr. Kirby also wants to visit with Dr. Greenburg regarding Dad's radiation and his two remaining radiation treatments. Dr. Kirby is going to be looking into a skilled nursing center and letting me know what our options are. Most likely we are not looking at moving Dad until AFTER his radiation treatments.

Below is a list of steps I received after speaking with Dr. Kirby on Friday.

1. Complete 2 radiation treatments
2. Admittance to a nursing/skilled facility to build strength thru physical therapy
3. Home for continued healing of the throat/swallowing/eating tolerance
4. Re-Evaluate cancer stage

Stuart arrived as we were leaving!


Bobbie Knows

I got a call from Bobbie yesterday. Dad had asked her to make a print out of the call list I made for Dad. On that list it had his debt related to credit cards. She asked me if it was really a fact that Dad had over 35k in credit card debt. I had to tell her the truth. She seemed concerned since her perception during the early dating period was that money was not an issue. He was very generous and they would trade paying for meals, etc. He seemed to make a lot of whim purchases with little regard to the financial impact. She was floored that someone who seems so financially savvy could be in such a pickle. What could I say? I agreed and said it was a shocker when we discovered it two months ago.
On a more sobering note, Bobbie says she just cannot allow Dad to move in when he is released from the hospital. He says he does not need rehab and is ready to go back to the FREE world. She fears that he will make his way to her place and she will be stuck being a 24 hour caretaker like she was when he had his first feeding tube. Guys, it is up to us to have a plan that does not allow Bobbie to have to be his nursemaid. This woman has visited dad EVERY day since he has been in the hospital. She has been neck deep in this mess since the second week she met him. She now knows all Dad's warts. We may as well involve her in some of our discussions so we can help prevent her from being the victim. She cares for him deeply, but most of you know she just buried a husband from cancer who occupied the room three doors down on the same floor of the hospital Dad currently is placed in.
I am not seeing enough blog info from anyone. The next 2 weeks is critical. It takes very little time to update each other this way so we can avoid having to burn up the phone lines.
We need to implore Dad to go to the rehab center. He has been on his back for 2 solid weeks and we want to get him as healthy as possible for the next scan. It is not Bobbie's job to do any of this. It is a miracle that she has been as involved as she has considering their short dating period.
Stuart----you are visiting him today. Tell us what you know?
Tracy-----any news on the release date and facility for rehab?
Suzanne---can you help me fight the electricity bill? I have the info and will be looking to reduce the $300 in any way possible.

I am going to start working the credit card debt down tomorrow. Melissa and I are going to go through the medicaid application today and see if it is 100% complete. Dad has promised to sell $1000 in equities and send the check to my address. I will hold it in savings for now. It might be put to good use by paying on one of the credit cards to get Dad some financial flexibility. Will let you know when we mail it. Finally, I will let everyone know when we start getting evidence of Dad's mail arriving here.

Folks,,,,,,its getting to the end of the treatments. Please dive in and lets make this part successful!

Saturday, April 11, 2009

Thank you Steven!

I just want to say Thank You to Steven for all his hard work and efforts this past week. I am sorry that I am unable to do some of the personal things that I would like to for Dad. It is hard being so far away and not have any control over the things I can or better yet, what I CAN'T accomplish.
I spoke with Dad today and he seemed to be in a good mood. I think the best thing is that Dad still has his wit about him. I will try in the next few days to have some heart to heart conversations with him and definately find out what his wishes are.

Happy Easter!

I-75 North

I left Dallas yesterday with a range of emotions. Part of me was happy to accomplish so many things in so little time. The other part of me was wondering could I have done more over the last two months. If we get to the end of radiation/rehabilitation and find that the cancer is still in his neck it will be very troubling. It is important to continue forging along in a positive manner. But,I think we were all fooled when we heard 80% and how treatable tongue cancer is thought to be.
I can't tell you how to apply your energy and time going forward. I can ask each of you do what you can? This might mean time. This might mean personal visits. This might mean checking on his apartment and car. It might even mean talking about items that are uncomfortable. None of us know if Dad wants to be buried or cremated. We all know his will is outdated and still makes mention of Norma. It needs to be attended ASAP. He has very few items in his apartment, but I am sure he has a list of things he wants someone to have. Maybe setting up an attorney is a smart move?
All Dad's mail is coming to Arkansas. Since I have it re-routed, I may need each of you to make a drop off at his hospital/rehab/apartment, depending on where he is at the time. He is also working on his phone list so I have carte blanche to talk to people regarding his accounts whenever necessary.

In a nutshell, we need to stay positive. He needs to get better so the quality of his life that he has left is excellent. No one knows what the future will hold. He could live 10-15 more years for all we know. But, he could also be gone in a flash. Don't wait for tomorrow to have the conversations that you need/want to have. We had a good one yesterday afternoon and it was one of the best he and I have ever had.

Our lives were not all sunshine and lollipops. But, Dad was a good provider. He missed out on the emotional part for a good portion of his life. Most of us have attributes and habits that are traceable to our upbringing and parents. Cherish the good times that you had with Dad and lets make this next month extremely positive. He was very down yesterday after the news he heard from Dr. Kirby. It's our time to pull him out of the pit.


Friday, April 10, 2009

One Positive note

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Dad got a visit from Dr Kirby. Dad said they cannot give him anymore radiation after the remaining 3 treatments. Dad is on the highest dose he can receive. He also mentioned surgery, but it was nothing concrete. He stumbled around this issue. He said he would talk to the family concerning rehabilitation.

I am trying to set up a doctors visit ASAP for a family update.

Dad is convinced he is not going to make it through this form of treatment.

Melissa's List of To-do's for my visit

Task 1=Try to schedule an appt with the social worker=Met with Dorothy. Nothing earth shattering here. She was supposed to deliver a new medicaid application, but two days later I had nothing. Luckily, we found the old one. She did help me sell the concept of medicaid to Dad, so that was pretty helpful.
Task 2=Make sure Dad can use feeding tube before he leaves the hospital, to include feeding and flushing. Dad fed himself yesterday after I forced the issue with the nurse. It is straightforward. The key is the rinsing of the tube every time to prevent clotting of the Ensure.
Task 3=If a home nurse can be oredered we would like this to follow his nutritional statu and make sure he is using the tube correctly. I believe we are going to use the service that is in-house at his apartment? Medicaid could have a lot to do with choices here.
Task 4=When Dad runs out of feeding product does he order this or does home care RN? We need to know which formulas he is going to be prescribed per Dorothy the social worker.
Task 5=Can Dad eat anything by mouth? Yes, can and want are two different things. He did drink coffee yesterday.
Task 6=What does he do with tube when showering? Dad has been through this before the last time he had a feeding tube. No change here and no reason to cover.
Task 7=Try to finish and mail in medicaid application. Complete and will mail in from Arkansas.
Task 8=Make sure hospital has a record of Dad's medicare and supplemental insurance. Dorothy assured me that this is all in line and already on record.


Thursday, April 9, 2009

Caregiver Information

Melissa derived the following information through many calls today:

I talked to Janet Zettle who is a private caregiver.  She is super nice and sounds like she has a lot of good references.  She is 70 but very independent.  Her son is the assistant chief of police for Plano.  She is going to be in CA for a week starting April 21st.  Her cost is $12/hour with a 4 hr minimum.  The agencies I contacted in Dallas are between $16-$20 hour with a 4 hour minimum.  She can help with meals, laundry and she could be taught the tube feeding.  I told her that we still are up in the air about what is going to happen but I would call her either way.
FYI,  there are many types of medicaid.  If you dad qualifies for straight medicaid then that will become his supplemental.  If he qualifies for QMB medicaid then that means that they only pay his monthly premium for
 medicare part B which is $96.00.  If he only qualifies for QMB then he would still keep his secondary insurance and have to pay the monthly fees on that.  It is all very confusing but the main thing is that you got it done and we can turn it in and see what happens. 


I arrived this am at 0830am....Dad was still asleep and complained of a very sore throat. I went back downstairs and handled some work business. When I came back at 0930 he was up and feeling better.
Here is what we got accomplished today:

1. Found the Medicaid application and got it 99% completed after 1 hours work.
2. Got Dad to agree to let us re-route his mail to Arkansas. This with a lot of
Bobbie. The plan is to streamline what is coming in and mail back to him
what is important.
3. I have built a list for Dad to call all vendors he does business with and
get me added as someone who can talk directly with them. This is huge.
4. Inspected his apartment. Electricity is back on.
5. Met with the home health care advocate at Evergreen about Dad and the
services they offer. This is in the lobby of his apartment building.
6. Found out what Dad had being paid automatically...its everything but his
electricity, rent, and cable.
7. Discovered that Dad's supplemental insurance is going up 8% in August
unless he changed to Plan F with USAA or Medicaid becomes his
8. Cleaned out all the clutter in Dad's car, minus the trunk.
9. Took his dry cleaning in to the chinese guys that Dad loves so much.
10. Bobbie is taking care of his laundry.

All in all.....very tiring day.

Tuesday, April 7, 2009

That's the night that the lights went out in Georgia

Well....the trip to the apartment yielded some suprising results. In two words-no electricity! Dad was involved in some type of squabble with the provider over $75....this resulted in me having to get the service turned back on to the tune of $300. Not good. Of course, all the food items in Dad's fridge were ruined. Three bags of stuff got lugged down to the dumpsters.

While at the apartment I gathered all of his bills and tried to straighten the place up. He is a horder.....a habit we must try to break.

When I returned to the hospital it was feeding tube time.....the first can of Ensure was delivered to Mr Stomach via the careful hand of Paula. She is using the syringe method to gravity feed the liquid into Dad. He is going to need to do this 4 times a day. Everything worked as planned and it was a resounding success.

Bobbie arrived later in the afternoon and brought clean clothes. She is a saint.

More tomorrow-----Steve

Medical City visit Tuesday April 7th

Today was a good day to visit Dad. When I arrived this morning they were transporting Dad to conduct his radiation treatment. They literally wheel him out of the room to an ambulance so he can be transported 1 mile down the road. The personnel there told him he had 5 more visits for radiology.
Dad had his feeding tube operation yesterday and all seems well. The nutrionist has not visited yet. This will be a crucial session since the failure to keep down proper nutrition put him in Medical City in the first place.
I talked to Paula, his nurse. She said his platelet count is currently 145, much better than the count of 34 last week.
I am off this afternoon to check his apartment for food items that need to be disposed of as well as collection his drycleaning.
More as we go forward this week.

Sunday, April 5, 2009

Good Evening,

I visited with Dad today and it was a great visit. He walked the halls with me and was moving well. He weighed himself today..189.5 with his shoes and sweatsuit on. I told him that women never weigh themselves with their shoes on! haha

I had a lengthy conversation with Dr. Kirby on Friday. Presuming that Dad's numbers are still projected at 100,000 this Monday, they will "assess" him for a feeding tube before they operate. I told Dad that he needed to make sure that I was called (if I was not there) before ANY surgery was to take place. If he is "tube" ready, they will do the surgery on Monday. He will have a 3 day recovery(estimate) followed by a visit with a dietician. Dr. Kirby also mentioned a nurse checking in with him at home, too.

Dr. Kirby is very concerned with the "slow shrinkage" of Dad's cancer. He wants Dad to resume his chemo/radiation as soon as possible. This is where we can be big encouragers to Dad. Dr. Kirby also stated that it had to get worse before it gets better. Hopefully with the feeding tube we will overcome this set-back and move forward.

I will be with Dad tomorrow and so will Bobbie!

Night Night~

Saturday, April 4, 2009

The Latest....

Talked to Dad last night. He was in good spirits. Throat is still on fire. He believes that they might insert the feeding tube on Monday or Tuesday. We touched base with the nurses station and verified that the room could receive flowers. We sent him a spring arrangement and that seemed to perk him up.
The nurse said he was doing much better and is off restrictions. His immune system is in much better shape versus when he entered the facility.
Phone calls and e-mails are good right seems like he is very bored and longs for conversations.

I will be checking on his apartment on Tuesday. Mission one will be to see if anything in the refrigerator is spoiled. Will play it by ear from there.

Steve and Melissa

Wednesday, April 1, 2009

Tracy's email

This is Tracy's email since she is having problems posting!

Sorry for not posting to the blog.........issue with sign-in continue

Dr. Kirby called me today per my requests. He stated that Dad is on a "day to day" regimen until he is able to have surgery when his platelet count gets higher. He ordered IV nutrition for today beginning this evening. Hopefully, that will boost his energy, too.

Dr. Kirby is concerned that Dad is not "ready" for any kind of surgery particularly with his strength levels. It is my understanding that when the platelets counts go up (with the help of the shots and nutrition) he will access whether or not Dad is able to sustain a surgery right away or whether Dad will need to wait a few more days until his strength comes back and he can withstand a feeding tube surgery. I also mentioned to Dr. Kirby that it was our desire to have Dad operating the feeding tube BEFORE we leave the hospital. He agreed with me.

All in all, Dad is in good spirits when I visited with him today. He's understands that it's a "waiting" game at this point. Although we have stopped all treatment( chemo, radiation), Dad is still positive that he can pick up where he left off. According to Dr. Kirby, we still have a big fight ahead of us with beating this cancer since we have stopped treatment for a 2nd time. Meaning, we have to backtrack making the length of chemo treatments now even longer than we thought. Please don't reiterate that to Dad because he might feel defeated at this point.

Bobbie is visiting Dad everyday. Please keep in touch with him as much as you can. His immune system is NILL so visitors are restricted (meaning my kids won't be seeing him) no plants, flowers, etc. ....big sign on the door with a lists of many NO's! Pray he doesn't get anything while he's boosting his platelets!!