Friday, May 15, 2009

Dr Greenburg Dr Kirby----Here is the running dialogue with the doctors

Inflammation will continue. Oral intake is at 10 percent and doctor wants him to increase. Dad takes no pain medication. Dad needs to walk 30 min or more a day and he needs to use a humidifier. Recovery consists of nutrition and exercise. Taste buds will never be 100 percent. Dad was a stage t2n2c. He is now in remission and awaiting his pet scan. If any residual cancer is hot they will take care of any of this thru surgery. Pet scan will be done in 2 mos, or 3 mos of completion of treatment. They treated Dad extremely aggressive. Feeding tube goes away when he eats 100 percent of his nutrition orally. They don't anticipate any cancer in tongue. If there is any cancer it will be in the neck....very manageable surgery if needed. Pet scan in 2 mos and results in 24 hours. Dad needs port taken out immediately. Neck looks great and mouth care is instrumental. Sugar free gum was suggested as well as gatorade or fruit juice.

Tuesday, May 5, 2009

Phone issues

SO, after waiting on hold for 20 minutes and trying different avenues, I am completely frustrated with what to do about the phone!

A land line will cost more in the long run and I could not even set up new service (hence being on hold for so long) due to the fact that I was calling from VA and not TX. It would require a deposit, monthly fee, and the inconvenience of Dad only being able to talk on that phone while at home.

A new cell plan (I found an unlimited package for $99, which Dad said he used to have) might be easier. I spoke with Dad today and he said he hardly ever goes over his minutes now. I was thinking that if we all pitch in for the unlimited plan for one year it would cost about $100 for each of us.

Let me know what you all think? I can move forward with whatever we want to do.

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!!


Monday, March 30, 2009

Melissa and her talk with Dorothy

Hope it is ok but I took it upon myself to call the social worker at the hospital who will be working with your dad.  Her name is Dorothy Swally and can be reached at:

972-519-1584.I informed her that Tracy will be our spokesperson for the family.  I gave her Tracy and Stuart's number and asked her to please call if anything comes up.  Info was given to her regarding your dads medical history, ie. Peg tube being placed then removed, stay at Gulf States and IV nutrition.  She mentioned that because of his experience he may be worried about getting another feeding tube placed.  He is able to get chemo and radiation while he is in the hospital.  Most likely he won’t finish out his treatments because usually people don’t stay a week in the hospital.  At least he might be able to get some treatments while he is there.  She will call us if there is anything that we need to be involved with.


Thursday, March 26, 2009

no date yet

As far as I know, no date as been set for Dad's feeding tube. I will check with Dad and his Dr. tomorrow.

Tuesday, March 24, 2009

Weight Loss = Feeding Tube


I talked to Dad tonight. He sounds terrible. His doctor visit was fairly straightforward. If Dad loses anymore weight he will have to get another feeding tube. Dad weighed 215 when he started this process. He now weighs 186. He says it is like his throat is on fire when he tries to eat. I begged Dad to do his best to ingest 4-5 cans of Ensure a day. He is going to try. His next appointment is Tuesday the 31st at 3pm.

Sunday, March 22, 2009

We are what we eat...

Sorry I have been bad about posting things when they happen.I agree this is the easiest way to update everyone. WE will try to be better about this...

Talked to your dad last night and he said that he isn't doing great. His doctor didn't give him chemo on Friday because of his blood work. He is getting discouraged about not being able to eat what he wants. I talked to him about drinking 8-10 Ensure Plus drinks a day(per my dietician friend who works with a lot of cancer patients). He says that he can't drink that much liquid. I explained that it is really important that he try to even drink 6/day because this will give him the calories,nutrients,vitamins,etc that he needs. It sounds like he is just missing normal food which we can all imagine how that would be. Most everything he tries to eat isn't very satisfying. The other thing that he did mention was that he has started to cough up blood. He told me that he hadn't mentioned this to his doctor. I encouraged him to be open with his doctor about this so they can check this out.

Steven will be in Dallas from April 6-10th. He would like to go with him to talk to his doctor about some of these issues and also what to expect down the road. Even though his treatments may be over soon he will need follow-up on a regular basis. We are going to be back in Dallas in the middle of May and will also check in with him then.

Happy Sunday! Melissa

Friday, March 13, 2009

Food for thought (ha ha) I am so funny ;)

I called and spoke with Dr. Greenberg's nurse Penny today. Per Penny (who saw him today) Dad is in good spirits and is doing very well. She said he is over half way through with his radiation treatment and has only lost 5 pounds.
I asked her about a special diet for Dad and she said it was mostly common sense at this point (ie: whatever he can tolerate: eggs, oatmeal, soft foods) She also thinks if Dad can consume around 6 cans of Ensure then he should be OK.

There was no mention of any IV feeding, in fact she said they were not even thinking of that at this point.

So, the goal for Dad is to maintain, maintain, maintain!! If he can continue at this rate, he is golden.
She could not comment on his chemo as she does not have much to do with that side of things.

Dad needs to keep eating or at minimum get some nutrition throughout the day (that could be where the Ensure comes in to play). Are we still trying to call Dad once I week? Even an email would be good. If you talk to Dad, even if you think it is irrelevant; just post a comment. It is not that hard to do and it keeps everyone up to speed.

I hope this answers some questions. If there is anything I missed then I can make another call on Monday ;)

Have a super weekend...and Stuart or Tracy, can you manage a visit with Dad soon? I know Tracy was going to go grocery shopping with him and I think that is a great idea. You know how Dad is, he loves to have his hand held!

Tuesday, March 3, 2009

:::cricket noise::::

Is anyone out there? I spoke with Dad yesterday and he seems to be doing OK. He was telling me that it is hard for him to find something that he likes to eat or can tolerate eating. I am sure that must be very frusterating.
So, if I am correct, then this is the start of Week 3 and he has 4 more to go. I know that it will get worse with time.
He seems to be doing ok otherwise. Complaining that the folks who live in his complex are "very old". Ha! Ha! I just wonder what he sees when he looks in the mirror.

Ok, short and sweet...

Can Stuart or Tracy plan a day to visit him in the upcoming weeks? Just to make sure his apt looks good and he is doing well.

Friday, February 13, 2009


I spoke with Dad last night and he told me that the Dr told him he would have to have a medi-port inserted prior to the start of chemo. I believe this will be a day surgery procedure. I think this is a great idea and hope Dad has no issues with this. I was mistaken thinking Dad would have chemo everyday but, it's every WEEK. I am considering calling the oncologist to find out what meds he is on and the duration of treatment. Dad didn't really know.

He seems really happy with his apartment and has even hung a few pictures! So happy that this apt will be more like home than the last one. This is crucial I think for him when he is down and out.

Anyone else have any other news?

Tuesday, February 10, 2009

Address Mistake----See below for correction

600 Independence Parkway #2219
Plano, TX 75075

Sorry for the confusion,
Steve & Melissa

Thursday, February 5, 2009

The battle has just begun!

After my visit to see Dad I feel great about some things and frustrated about the rest. Like I said in the previous blog, I could have stayed there another week and still found more to do.
I went with Dad to see Dr. Greenberg and he was wonderful. Dad will be having 7 weeks of radiation lasting 15 minutes long. He was fitted for his mask today so that his head will stay still during the procedure and also so they will not have to mark on his body!
The effects of his rads are:
*dry/pasty saliva
*taste dysfunction
*will not be able to eat (not sure about another feeding tube, Dr. Greenberg was shocked at the site of the last one and said the scar next to it was "unexplainable")

Some of these will also be permanent but should improve slightly with time.
Dad will be put on pain meds for the duration of this therapy. The further into treatment, the stronger the meds. Once he is done, they will wean him off these medications. This will obviously impair his driving ability too.
Dr. Greenberg said that he will be in the toughest period after the 3rd-4th week on
Dad is a very pleasant patient and the whole staff said they would do anything and everything to get him through this. He has a very tough road ahead and I assume some days he will spend in bed. Let's just hope and pray his attitude gets him through. I tried to explain over and over how important that is during all this.

He has an appointment with the oncologist Febuary 11th. His name is Dr. Kirby. The radiation will probably get underway a few days prior to chemo.

I was unable to get to Dad's car :( and the paperwork Melissa prepared. I hope Stuart or Tracy can help out with that.

Dad is unpacked for the most part and hopefully will take some pride in this new place. I think Bobbie plans to spend some time there so maybe that will make him more accountable.

I only wish I was there to do more.

The Dr. recommended Dad take L glutamine liquid which I will be purchasing online for him.

Monday, February 2, 2009

what a day :) Dad and I started off early today in preparation for a 2 hour chemo treatment. For some reason his oncologist had given him the wrong dates, and Dad cannot start back on chemo until radiation begins. We left a little upset that we just wasted several hours and no treatment was given. Bobbie told me this was not the first time that Dad has been given wrong dates.

His rads appointment was set for 2/9 (next Monday) I called the office and asked if we could move that appointment to a closer date. I was able to get a consult appt for Wed morning at 8:30am. He has to have a consult, then a planning session (Basically, to fit him for his mask)He will wear a mask everyday to radiation so that his head won't move during his treatment. I expect he will have a start date sometime next week.

I think it is in Dad's best interest to change from Dr. Perkins to a new oncologist in the Texas Onocology group, where he will be getting his radiation. It seems really silly to drive all the way to Med City for chemo and then drive all the way to Plano for his radiation treatment. I hope no one objects to this but, I called Dr. Perkins office to get this process rolling. I will also ask Dr. Greenberg for a referral on a new oncologist for Dad. HE will be going EVERYDAY for chemo, injections, and hydration. I want to make this as easy as possible for Dad and one-stop shopping is the best idea for him.

His new place is so nice. I believe this is one of the nicest apt's he has had in quite sometime. Thanks to Melissa for all the hard work getting him in and thanks to Tracy and Andy for giving Dad some furnishings to make his new house a home.

I have not accomplished near what I would have liked to...heck, I could be here a month and still find more stuff to do....IT's extremely frustrating.

Dad seems to be doing OK and I gave him a lecture about making this place a home and really trying to take care of it. Not sure if it sank in or just went in one ear and out the other...let's hope he will take some to initiative make it a nicer place to live.

I am still working on the paperwork Melissa, Dad can't find the folder with all his info in it.

Friday, January 30, 2009

Houston---we have liftoff!

Dad has secured a new residence. His new address is:

600 Plano Parkway #2219
Plano, TX 75075

He has also located a transportation provider for treatments:

American Cancer Society Transportation at 800-227-2345

Dad has made some great strides here. Lets keep encouraging him as his road gets more difficult!

Tuesday, January 20, 2009

Goals for the next month

Per our conversation:

1) Dad needs to find/call for a moving company from McKinnney to Plano
2) Plan for a back up in case Evergreen does not work out.
3) Trip to Tracy's house to look at furniture and pick out what he wants.
(how to move that furniture)
4) Suzanne to help clean out clutter in his vehicle during visit.
5) Find out amount of deposit and checklist to get the money returned.
(arrange walk-through)
6) Update Will

Monday, January 19, 2009

Conference Call

Tuesday January 20th
7:00pm CST

This should allow Suzanne to get out of class, Tracy is available both days, and Stuart is confirmed.

The number is 800-651-1252

Sunday, January 18, 2009

Conference Call Ideas

We are at another crossroads:

I would like to set up a conference call tomorrow night at 7pm CST. If that won't work, how about Tuesday night at 7pm CST?
We have several items to move to Evergreen Apartments, January 30th visit by Suzanne and Brooke, start date for radiation, Dad's current apartment, and the two e-mails I sent you tonight.

Please check your e-mails asap. Also, either reply by blog or work e-mail The 800 # is 800-651-1252.

Friday, January 16, 2009

This Weekends Plan

I am now in Dallas at 5pm on Friday night.
Melissa is still in Oklahoma and will be arriving tonight.

The start time for tomorrow is 9am. I thought Stuart was going to meet us in McKinney after his seminar. To answer your questions....Tracy and Andy time was going to be after Grant's game.......that way we would have a moment to get information together and have the scene fairly straightened up.

Call me on my cell if you need me tonight.

Thursday, January 15, 2009

Schedules and Plans for the Upcoming Weekend

I would like to find out what the expectations are for the upcoming weekend. I know that Steven and Melissa arrive on Friday. What are your plans for that evening? Meredith is swimming in Frisco and will be done at 6:30. We haven't made any definite plans after that.

As far as Saturday, Grant has basketball pictures and a game at 1:00 p.m. I know that Stuart is to arrive at Dad's apt. in the afternoon on Saturday. Is that still correct?

What would you like for Andy and I to accomplish on Saturday after Grant's game? Are there any plans for Saturday evening? I know that at some point on Saturday, Dad will need to work on his paperwork for the application for the apt.

On Sunday, Andy and I teach Sunday school. We could get together around lunchtime for any loose ends if needed. What are your plans for leaving Steven and Melissa?

I hope you don't think I am wanting "control" over your visit; however, the weekend tends to get busy and I don't want anyone expecting us to do something that we didn't know needed attention, beforehand.

Tuesday, January 13, 2009

It's all GOOD!

Well, the ARCH angel answered my call last night and bumped someone "gently" off the list of residents at EVERGREEN and now DAD is set and ready!!!

The manager, Sandy, called me this morning and said she had a 2nd floor apt. ready for DAD to move into! Prayers are answered!!

So, I spoke with Dad today extensively about the financial application and all the details he needed. I made him make a list of businesses and such to get a hold of for information. Unfortunately, we couldn't print off his bank statements at my house, so he is calling the bank to have them sent to him via mail. All these efforts in getting the application completed and approved are IMPORTANT! You must all encourage him to keep up with this "job" of getting the information while he is sitting idle in the hospital!

I am mailing a check for the deposit TODAY! He will move in on Friday, Jan. 30th which works out perfect for Suzanne to be able to assist with all of that! He's got a corner apt. so he only has one neighbor and is close to the elevator. That's conveneint!

Medical City of Plano is right down the road and he will have his radiation there in a month or more! Bobbie is a stone throw away! He can at least have Bobbie come over and have some coffee at the coffee bar occasionally!

I am thrilled! : )

Monday, January 12, 2009

Suzanne to Dallas

I did not get a chance to call the apartments today to see if Dad can go month to month...after I spoke with Tracy, I left for school and did not get home until now. (8pm my time) I will make it a priority to call first thing tomorrow. My understanding would be if the apartment is not leased to someone else this should not be an issue.

I will be coming to Dallas on Friday, Jan. 30th and stay through Feb. 4th. I am bringing Brooke with me. I hope to help Dad as much as possible during my visit.

Just a quick suggestion..since we are all such good bloggers now, will you please inital or sign at the bottem of your post. This way we can keep track of who is posting what information.


Life changes on a dime..............

Last Friday I thought Dad would be going to a skilled nursing facility. By noon that day after speaking with his doctor at Gulf States, he was going to be discharged to go home on Friday 1/16. I began the apt. search that afternoon calling Diane at Evergreen apts. I decided to go on Monday, so that I could see an existing apt.

I called Diane at 9:00 a.m. this morning to make an appt. at 1:00 p.m. today.

The apt. is no longer available after I made a 1:00 p.m. appt. with Diane and drove to look at it. She had rented it to someone who had brought back the paperwork and wrote a $150 deposit an hour before I got there. You can imagine my disappointment.

So, Diane showed me around the facility and gave me a long list of paperwork and financial documents that are needed along with a $150 deposit to secure a unit.

Diane then called another lady who had put down a deposit on a one bedroom apt. that she doesn't need until the end of February. She asked her if she would be willing to surrender her apt. for another one? Diane told said lady that we were in need of an apt. a.s.a.p. Diane told her that Evergreen apts. would call her back and discuss her options. She was willing to surrender the apt. within the perimeters that Diane stated IF SHE could GUARANTEE she would have another one for her at the end of February.

The apt. manager, Sandy, got involved when I had the "panic distress sign" and said she would call all the people who have put down deposits but had not completed the paperwork and turned it in. She would find out where these "renters" were on their move dates, seriousness in renting, etc.

All in all, Evergreen knows we can move Dad a.s.a.p.! I will be in constant touch with them to find out if any progress has been made. I did tour a 1 bedroom apt. that was occupied by two sisters who share a room with twin beds!

The paperwork is extensive. Dad will need to provide lots of financial info to support that he doesn't make too much income to live at Evergreen. I am not sure how fast Dad can get the info needed........Steven, if you could help me disiffer what you know and what Dad knows financially be helpful!

I have not called Dad to discuss any of this with him yet. I am only going to tell him about the complex and the apt. features at this point.

Suzanne is finding out if Dad could go month to month in his existing apt. if necessary? This would buy us more time, perhaps

Where one door closes.......another one opens! Pray for this facility to find an apt. for Dad a.s.a.p.

Sunday, January 11, 2009

The list goes on...........

To clarify some of your questions........

1. Dad's car is at Bobbie's. When I pick him up to go home on Friday, I will most likely take him to Bobbie's to get his car so that he can drive it to his McKinney apt. If that doesn't work out, he can get it at another time.

2. I did not have his mail re-routed since he's going home on Friday. Some loopholes prevented me from doing it this week without his presence. I will make sure he has the mail that is being held, delivered on Friday of this week. Andy is interested in going over bills/interest pymts with you, Steven.

3. I will attempt to schedule his radiation apt. and chemo doc. appt. for next week after he is home. Chemo (Dr. Perkins) is at Medical City. Radiation (Dr. Greenberg) is located in Plano off 15th street and we haven't had any visits with Dr. Greenberg's office yet.

4. In regards to packing Dad's apt., he has a kitchen full of items as well as odds-n-ends that are his. The furniture is staying with the apt. Boxes are going to be needed for all the above. We are all going to have to come up with a plan for furniture and such to furnish his new apt. (This is something we can discuss in our conf. call)

5. As Melissa previously stated, I will be checking out the Evergreen apts. tomorrow if all goes as planned. I will also touch base with Bobbie to get an update on her surgery progress.

Night, Night

Dad's Sunday phone call.

Dad called this evening. He is worried about where he is going at the end of the week. I told him that Steven and Melissa are coming down to help with his move. Overall he is in good spirits. He is eating solid food. he bragged that he had shrimp alfredo the other day. He has an Internet connection, and finished the Lance Armstrong book that Suzanne sent.

He is just confused about how to make up for the shortfall in income vs. expenses. I told him not to worry that it would be taken care of.

Steven could you give me a ring this week to discuss. I can help you out on Saturday. I have a expo to attend for part of Saturday. But I won't make any appointments.

Dad leaves Gulf States Friday 1/16, will head back to apartment

The plan now is for dad to leave Gulf States this Friday 1/16/09.On a good note dad has healed up well and is doing much better. The doctor feels like he will be able to return home to his apartment.He will not need to go to a skilled rehab afterall.

Tracy is going to look at the senior apt.(Evergreen Plano) Monday(1/12).From what we know that apartment won't be available until January 26th.She is going to see if there is any possibility that it can be available this weekend.Then we would be able to pack up the McKinney apt and move him directly into the Plano apt.If it isn't available until the 26th, we will pack up everything but the bare essentials so it will be easier once he is able to move.

Dad won't start radiation for another few weeks.He will have an appointment with his radiologist sometime next week.At that point we will have more details about what his treatments will be like.

We need to have a conference call early this week.What day is best for everyone, Monday,Tuesday, or Wednesday?Also let Steven know what time would work best to have the call.This will allow us to work out any details before the weekend.

The theme of next Saturday .......say goodbye to McKinney!


We need a call to action this week. We need to address the following:

*Can someone in Dallas (hint-Stuart) purchase wardrobe boxes (4 at the least) for this weekend.
*Do we need to jump on the Evergreen choice in Plano, Texas? It was first choice when Dad had us take him from facility to facility. Tracy, did you go to the site Friday?
*Stuart....did you ever get the Medicaid packet filled out and completed? We need to meet up Saturday/Sunday and get this in Melissa's hands.
*I have the Durable Power of Attorney packet.....its confusing. One portion is signed, the other not signed. It has been notarized. We also have all his insurance policys and living will residing in our security box at the bank.
*Where is Dad's car? Has someone started in the past 3 weeks...if not we need to make sure it is still charged.
*Where to next as far as care facilities?
*What do we know about the mail situation? Are we getting insight to credit/debt issues? What about bills that are popping up from this care or other suprises?

I fly in Friday afternoon from Buffalo. Melissa gets the lucky task of driving from Arkansas on Friday afternoon in the white beast. We have no agenda other than getting the McKinney apartment packed and completed. The clothes are 80% of the job. The other 20% includes food, cleaning products, pictures, and records/papers. Should not be too difficult. Its all part of the process, right? Look forward to seeing all.......

Wednesday, January 7, 2009

Wanted to throw this out to everyone and hear your thoughts. Diane from the Senior apt that dad looked at in December called to say that two, 1 bedroom apartments have opened up. They will be available the end of January. He is third on the list and she has contacted the other people before him to let them know about this. Right now it is really the first couple of people that put down a deposit of $150 will get the apartment. If he is serious then we need to decide if we need to move on this. Rent is $686/month with a one year lease. He would be responsible to pay the electric. Diane can be reached at 1-866-408-5758 if anyone has questions. This is a basic apartment not an assisted living. If we get on the medicaid application that Stuart has dad may qualify for help like a housekeeper etc. based on his income and disability. This would then give him some added support in the apartment.
Today I called the American Cancer Society to see if there was any resources we could use for Dad. I need to know more information in order to get transportation and other things he might need. I hope that this is something we can use in the future...meals, cleaning, and rides to his appointments will be helpful I think.
So, when we know more about his status, I will call them back and see what all they can offer.

Tuesday, January 6, 2009

Big Bad Rash

Dad has a big bad rash possibly due to an allergic reaction to his antibiotics. He is taking benadryl for itching but says it still itches! Grant had the same thing happen to him when he was hooked up to IV antibiotics over a period of time.

I spoke with Dr. Perkins today and he's recommended skipping the last 2 chemo treatments and head straight to radiation. Dad and I will go and visit Dr. Greenberg in Plano on Friday for a consultation. We will "unhook" him from his IV's and hook him back up when we return. As for now, we are sticking with Dr. Perkins for chemo at Medical Citye.

On a good note: Bobbie did well in her surgery and will be at the hospital for 2 nights.

Don't Forget!!

Bobbie has surgery today! Take a minute and send her a card if you can. She has weeks of recovery ahead of her.

Bobbie Harris
3429 Brookshire Drive
Plano, Texas

Keeping you posted!

We spent time with Dad on Sunday and he looked great! Grant took him on a walk while Meredith snapped pictures along the way. We brought movies for him, too. Unfortunatley, we missed the doctor who visited right after we left. The wound is healing and liquids are on the horizon for dad according to the doctor.

I was able to get dad to agree to have his mail re-routed to our home for a short period of time. This will also help him get his mail when he moves out of his apt. and doesn't have a forwarding address right away. He is also making me a list of items in his apt. that we need to move. He does own the majority of kitchen items in addition to some accessories here and there. He is going to let me know what can go to Goodwill and what he wants to go to storage.

I finally spoke to Amy who is the case worker for Dad at Gulf States. She is going to drop off a book to dad's room of skilled nursing facilities in the metroplex. She stated that we could find 3 choices and she would help us narrow them down. Most importantly, we have to find a Cancer Center that is close to one of these facilities. A point that Amy made was that some skilled nursing facilities DO NOT reimburse for transportation to Cancer Centers but will be reimbursed for patients going to hospitals, such as Medical City. I will hopefully find out more about Cancer Centers (especially in the Plano area) today from Dr. Perkins office. Once I find out the Cancer Centers location, I will contact Amy and have her do some ground work for me.

Dad is open to finding a "temporary" facility to stay at through his cancer treatments. He is mostly interested in finding a Cancer Center closer to his network of friends. I reminded him that he would be going to a Cancer Center long after his treatments are over, so it needs to be convenient to where he lives temporarily and permanently.

Dr. Kim (internal medicine doctor)who is overseeing Dad at Gulf States, will be meeting with Amy at some point today to discuss Dad's discharge date and progress. I expect to hear something from her late today.

Here are some pictures that Meredith sent to me. These mean so much to me since I am so far away. I think he looks pretty good!

Sunday, January 4, 2009

Holidays are over!

I hope everyone enjoyed their holidays. It seems as though Dad is doing better. I think his Dr. said that he "might" be able to have liquids in a week? Sounds like progress to me. He has a great attitude and I think that is so important at every stage of his treatment.

Friday, January 2, 2009

Visit Postponed

With the news that Dad's rent is paid til January 31st, Melissa and I have decided to postpone our trip for several weeks. We have been on the road the last several weekends and spent a full week with her parents in put it bluntly, we are too tired to give it our best effort.

We have purchased plastic containers for storage purposes and will make a plan for hanging boxes later. Our projected travel date looks to be Jan 17-18.

Thursday, January 1, 2009

Dallas Bound

It appears we are heading to Dallas this weekend to get the apartment settled. We will more than likely pack everything up and get it completely organized so we can store Dad's stuff in a storage unit or the next apartment?

More to come as we get closer to Saturday.


Happy New Year!

I had a very brief discussion with Pops today and was inquiring about his mail...hinting that someone needed to access his mail so his bills could get paid. He told me he was not concerned with this as he pays most of his bills online and he seems to think he is current.
I had to go deal with the kids so I cut the conversation short ......I will try to approach him again on this hopefully with better results.
If anyone has any better ideas..please pass them along.