Tuesday, 9/30/08

Lots of activity today with people filing into Pete's room.

Kidney's still not doing enough so dialysis will be again tomorrow. Pete is pretty bloated right now from all the fluids they are pumping into him and is very uncomfortable.

Tomorrow they will also begin giving him the growth factor early in the morning and he will get two shots a day to help his body to overproduce stem cells so that they can begin the collection process. They are giving him a lot more growth factor than what he had two years ago in Richmond because they are going to collect a minimum of 20 million stem cells and they only collected 4 million in Richmond. Everyone still seems in dis-belief that Richmond didn't collect any extra.

I will go do laundry and stop at the post office as well as treat myself to lunch while he gets dialysis.

We had another researcher here today to get written permission for a blood sample for research purposes. This time it will be to look at the proteins in his blood that affect his immune system. We're both always happy to help with research. That's the only way that a cure or better treatments can be discovered.

Pete made a few phone calls to friends in the evening.

Monday, 9/29/08...Pete's Words

I didn't get nearly enough sleep this morning. Last night into this morning was the last of the chemo (day 4) for this cycle. We had some of the worst response for the pump alarms and while Pete slept through it all, I was kept awake by the sound and in getting up multiple times to use the nurse call to request someone to come and turn off the pump for whatever bag was empty. That is behind us now.

Pete had increased creatinine and electrolytes and had dialysis today. I spent my time while he was in dialysis trying to make arrangements with creditors with little success. I also tried to find a suitable place where I could have some privacy to do some web training for about an hour a day for a week. I have the opportunity to do some training via the web, but need a place to do this.

His red and white counts were very low as were his platelets. He has some strange phenomenon from the very low platelets. He received a unit of blood and a unit of platelets.

He feels much better and is breathing much better this afternoon and evening.

He ate most of his lunch and dinner and spent the afternoon with my laptop visiting eBay and reading some of what I wrote in his blog. Based on what he's read, he'd like to share the following.

We found our way here by a lengthy process of trial and error. We made a trip that we had to make that was expensive and frustrating and perhaps bringing me a little to close to being so sick that I would not be able to pull out of it.

We are in good hands here. I still can't believe that we are here. We learned in a round about way that we were in the wrong place at the right time (Salt Lake City). I have no regrets, but we were happy with where we visited and had great hopes, but it was not going to be due to simple mathematics that is not what it should be about.

We will never forget our journey there and how well we were treated in general by the medical staff. We were outclassed.

We are in good hands now and the people are genuinely interested in my well being and we believe we can pull out of this and have a good quality of life to share together. We've come a long way compared to where we were last week.

I don't know where I was then.

Pete

We had a similar experience with an auto shop. We took a car to a shop once and they told us flat out that they were not our kind of shop. We went to this shop because we heard it was the best of its kind. We were out of our class and they let us know in no uncertain terms. Luckily we found another shop that was not as well known and they were outstanding and we recommend them to everyone we know. This is exactly what happened to us at Huntsman except that they didn't come out and tell us that we were not the right class of people to be there, they just told us the same thing in demanding money in advance.

Sunday, 9/28/08

It's been a week today since we left the hospital in Roanoke and headed to Little Rock. It seems hard to believe now.

Today was a low key day. Pete was a little extra tired due to low blood counts and slept a good part of the day.

Kidney doc says that his creatinine has risen slightly, but at a much slower rate than in the past. His electrolytes are up since dialysis, but he believes that is from tumor burden while the Myeloma is being destroyed with chemo treatment. He ordered fluids and diuretic. Pete felt bloated an uncomfortable by bedtime even with giving more urine output. Tomorrow he will have dialysis and should feel relief in that department.

Dr. J seems happy with his progress and is definitely more laid back and relaxed on weekends and likes to take extra time to get to know us. We also learn more about him.

We each took a nap in the mid-afternoon. With the chemo running from 6 p.m. to 6 a.m., we are awakened a couple of times during the night for vitals and then about 5:00 the pump alarm starts going off as each of the chemo bags and finally the saline bag run out. Pete sleeps through this, but I get up and call for the nurse to come silence the alarm and make the necessary adjustments to the IV pump. The worst of this is at 6:30 with the final alarm for the saline bag. Since this is nurse shift time, I can call twice and it doesn't make a difference because we will not see any nurse before 7:00. If I were not here I guess the alarms would go off for hours on end. I did suggest to the doctor that if he ran a cycle like this with other patients that he might want to pick a different 12-hour period that didn't revolve around the nurse changeover. He was very appreciate to the attention to detail and feedback. What a pleasant surprise.

We got up and about from our nap about 3:00 and Pete sat up in the chair so that his bed could be made. He ate his lunch and we stayed sitting up and out of the bed until 9:00 in the evening. We watched t.v. and a DVD of one of my favorite old Vincent Price movies that Pete has never seen, The Abominable Dr. Phibes.

Monday we'll be back to the rounds of doctors, interns, attending physicians and all the other hustle and bustle that goes along with a week day.

This is his last night of chemo. Tomorrow night will be his last night of Thalidomide. We got started on that one night later due to having the drug shipped with next day service from the manufacturer. Now we'll watch his numbers and when they start coming back up, then they'll run tests again and decide about more chemo or go straight to stem cell harvest.

We've had a couple of nurses and other employees over the weekend that have asked us about our 'story'. They have heard about us and I don't think believed what they heard. Two different people have commented on our story of our trip to Huntsman. One stated that they know that the doctor there that left here is getting paid a huge salary. They said that because of this Huntsman must demand money from folks like us because they have to have some way to pay for him. The other person told us that anytime you are looking for a facility to go to for treatment, you should look to one that is given the most money for research. If a facility is given lots of money, then their focus will be on treating the patient first and foremost. I certainly don't have any idea if there is any truth to either of these. I only know that it is obvious in so many ways that Peter and his improvement are the focus here and it really shows. I think back to the emails that we received to remind us that if we did not have a check in hand when we came for treatment at Huntsman we would have to turn around and go home without any care. I can only shake my head.

Saturday, 9/27/08

This was a nice day that went by quickly.

We have discovered some very nice nurses and nurses assistants that work weekends only. They have been a real delight.

We showered, took a walk around the floor, and then used a wheel chair and went downstairs and outside for some fresh air.

Peter ate well today and seemed a little more awake. We had a nice chat with our oncologist here, Dr. J. We like him more and more as time goes on.

Generally speaking, a nice day as things go in the hospital. You take what you can get and it's the little things that make us happy.

Peter is on his third night of chemo and taking fist fulls of pills each day morning and night. Monday morning should wrap up the chemo for this cycle.

Good news on the kidney front

Pete's numbers are improving and not climbing after dialysis. The kidney Fellow (in the doctor fellow sense and not just a guy) stopped in very early when we were still sleeping. He said that since his numbers didn't shoot up this morning when they did labs that he is going to give Pete the weekend off from dialysis and schedule him again for Monday.

His electrolytes are all normal and his creatinine came down to 6.6 from 8. (It was 10.4 before that.) He hasn't passed any urine on his own since dialysis, but the nurse said that's not unusual. It's the first time that he's gone that long before. I'm sure once he gets up this morning he'll get 'the urge'.

His platelets are staying low around 33 and his red counts are gradually sinking so he'll probably need a transfusion today.

We'll see what Dr. J. says today.

Friday, 9/26/08

Last night Pete received his first chemo. He's receiving his second day of this first cycle now. It is quite a mixture of IV drugs and lots of pills. Normally this is given over 24 hours for four days. Because of the delays related to our wasted time with Huntsman and their delays that have resulted in his renal failure, adjustments need to be made to allow for dialysis.

He is receiving the chemo from 6 p.m. to 6 a.m. over a little more than 4 days and is receiving dialysis during the day for 4 hours every other day or every day if needed.

The dialysis is working well. We do not understand why this didn't work in Roanoke.

Everything is going well and he is feeling stronger and has more appetite. I know that will change very soon.

This morning he got up, showered, shaved and cleaned up more at the sink, ate his breakfast, and then was rushed off to dialysis.

Last night about 11:00 he woke up after his bad MRI experience and was hungry and craving cake! He wanted a piece of cake, cheesecake or a danish. He didn't understand that they don't have that kind of food on the floor here. He was so adamant about this and I knew about chemo-related cravings of his from the past that I asked a nurse where to find such a thing. I ended up going to a coffee shop that was still open and buying him a couple of different deserts. They didn't have any danishes, but they did have a lemon-cheese type of dessert and a slice of cheesecake. So I brought him one of each. He ate the lemon-cheese dessert and a carton of milk.

Yesterday afternoon he received a handful of emails and more today. He was very surprised and certainly surprised at some of the people that he sent their messages.

They said that dialysis went well today with 3 liters being removed. We'll see what the creatinine goes down to tomorrow.

He was gone today for dialysis for 4 hours and gone from the room for 5 hours. I took the car and went out to do laundry, have lunch at a little Greek restaurant, and drove around a little to see what types of stores were near us before returning to the hospital. When he did return to the room his lunch was waiting and he ate about half of that and sucked down a Coke that I brought him. I brought back a couple of boxes of Little Debbie cakes in case he wants something else like that in the near future.

We've learned a lot this week. It's amazing how much more in-depth things are here and how much more there is to learn about treatment, the body, and this disease. The one thing that is apparent is that we've been given a lot of bad information. It's very obvious that the doctors and nurses here are truly interested in his health and his recovery and treatment. The more obvious that becomes, the more obvious what a terrible mistake we made to go to Salt Lake City. It was more than just a financial mistake, but much more.

The doctors here have all said that it is certainly was not necessary, nor recommended, that Peter was taken off his treatment for the purpose of collecting stem cells. Obviously a big difference of opinion. It's a mistake that almost cost him his life and the delays on the demands for money and not allowing any treatment before all monies were paid up front caused more delays and are proof that some institutions are not interested in patient's well being.

This hospital and city are not as fancy and pretty as Salt Lake City, but Peter is getting the best care of anywhere in the world.

Thursday, 9/25/08

Tonight at 6:00 Peter will begin 4 days of DTACE. He will receive Dexamethasone and Thalidomide orally. Then he will receive Velcade, Cyclophosphamide, Etoposide, and Adriamycin via IV continuously.

Today he had a good appetite and ate a big breakfast as well as being very thirsty. I was happy to see him eat since I know from experience that once he gets into chemo he will not have any interest in eating.

We met Dr. Barlogie today who is the head researcher here and whose name we have seen published several times over. He reminded Pete of his skin head days. Pete was pretty surprised at his smooth head, jeans, black tee shirt, and big dog collar. He got quite a kick out of it. The entire Myeloma team makes their rounds on Thursdays so we had them through here as well as the entire kidney team of residents, students, fellows and an attending physician.

Yesterday his creatinine was 10.4 and after dialysis it was down to 8.0. That is a good response. He will continue to get dialysis. It will especially be important in the near future because as the chemo goes after the Myeloma, it will start sending more to his kidneys as the Myeloma is killed and they will be further clogged.

He had a PFT test today for lung function. He was to have had an MRI yesterday of his whole body, but because they ran out of time he was to have it today. He was due to receive a sedative in advance of this, but someone tried to be efficient and send him straight from the PFT test to the MRI without this. He was not able to tolerate it to complete the MRI.

The MRI is very loud and there is a lot of vibration. The vibration shakes his already painful bones and makes him in more pain and the entire experience made him nauseated. They quit and sent him back. From the look on his face I knew he was miserable. He has slept for the afternoon after having some ginger ale to settle his tummy.

There is bone involvement (meaning lesions) in his spine at L5 (lumbar region) and in his right hip. There is no soft tissue involvement. There is bone involvement in his skull around his right eye.

We are not going to have an overall plan. The plan is to hit him with this chemo and continue the dialysis and try to get him better. After the chemo he will repeat all of these tests. The gene test is also repeated. Whatever chromosomes are affected before chemo will be compared to after chemo. That's how they can tell if this is working.

After chemo he will receive growth hormone twice a day for several days and they will collect 20 million stem cells. The advantage of the chemo is two-fold. It will reduce the disease before they collect and it will make the bone marrow produce more cell turnover and more stem cells that will aid in collection.

In about 14 days he will become neutropenic or super at risk for infection because of no white count. He will regain counts around day 17-20. He will be hospitalized through this period to control any problems.

After the first chemo and tests, it will be determined whether he receives another dose of chemo, goes into a study, receives a transplant. There is no way to have any future plan until we see what happens after this chemo and the main goal at this point is to save his life.

I will post more tomorrow. He will have dialysis tomorrow too.

Wednesday, 9/24/08

The day started out well with a good shower. We knew this was going to be another busy day so we got an early start.

The shower here is a huge roll-in shower. I had planned one like this, though perhaps not quite as big, for our future house we'd like to build. Now we're both really sold. This is great because there's plenty of room for both of us and for me to be easily able to scrub him down and hose him off.

Pete signed a consent to dialysis today and received his first dialysis. His creatinine level had risen to 10.4 this morning, but after dialysis it dropped to 6.6. This begs the question of why this didn't happen with dialysis in Roanoke? The decision for dialysis will be day-to-day right now. I suspect they will keep going to get the number lower. Normal is 1.4 a the top of the range.

He also had the bone marrow biopsy and double work in that area with another person that also took the samples from the bone marrow for gene analysis. For the first time ever he was able to get some IV meds to relax him and put him to sleep after the ordeal.

Because he was in dialysis for 4 hours and then had the biopsy, there just wasn't enough time left to do the full body MRI. He still needs to do that and the PFT test (lungs).

Any testing must be finished up in the morning as they need all tests completed for a baseline before giving him chemo for tomorrow.

They are scheduled to begin chemo tomorrow, even if it is late in the day. He will receive chemo for 4 days straight. I can't remember that he's ever had it that intense.

He's had some strong stuff before, but we're wondering how this will compare. So far, every time that they tell him he will lose his hair he never even comes close. His body hair thins a little, but the hair on his head and his mustache have never fallen out.

Tomorrow is Thursday and we are told that every Thursday Dr. Barlogie, the head researcher, will make rounds. We are rather anxious to meet him. I met the director, Dr. Anaissie, last night while Peter was having his PET Scan.

Hopefully we'll learn of the plan soon as well.

While Pete was at dialysis for 4 hours today I drove to the nearest post office and rented a small post office box for 6 months so that we could have our mail forwarded.

They have tentatively told us to expect to be here for possibly 4 months. I'm not sure how we'll manage, but we know that God will provide somehow.

It's unknown at what point he'll become an outpatient. Normally this procedure is all done as outpatient because the belief is that patients do better in normal surroundings with normal activities and a better lifestyle outside of the hospital. We'll need to rent an apartment it sounds like. We'll cross that bridge when we get to it.

Because Peter was so bad off when he arrived, they want him to be hospitalized (and I feel better about it) for the initial process because it's not known what may become a problem or need attention.

Sending Mail

Use this link for the address to mail cards and letters. You can also send a patient email. Emails will be printed and delivered each day.

We do not yet know how long he will be an in patient, but I would expect he would be so for the next week.

The room number is 778.

From Hospital to Hosptial

What a wild weekend and week so far.

We were pleasantly surprised last weekend when we had a stroke of good luck with two doctors on call for the weekend that were in line with each other and our line of thinking.

I arrived early on Saturday to find Pete gone from his room. I panicked. That is my worst fear and I walk fast from the parking garage to his room anytime he is in the hospital because I can't get there fast enough to see that he is O.K.

The nurse really sent me into a rage when she told me he was taken to dialysis at 7:30 that morning. We just heard from both the renal doctor and the oncologist that there would be no dialysis over the weekend to give him a break and to see how he would do.

I insisted that the nurse call the doctor on call. She was very good about putting up with my tirade and was able to let me talk to the renal doctor on call that was down in the dialysis room. It turned out that he was the same doctor that saw him early Wednesday morning when I didn't even know there was a problem. We talked for a long time and could see that there was a lot of mis-communication on a lot of different levels. At this point he was well into the process and we agreed to finish it and to do no more. The doctor didn't believe it was helping at this point anyway.

I went back to his room to make some angry phone calls and try to calm myself and decide what to do at this point. My son was searching for a flight home from China since it didn't look like Pete was going to survive this.

Not long afterward a nurse came in to call me to the phone. She said that the renal doctor was on the phone again. He said that they were about 20 minutes out from being done and the temporary port in his groin failed and they had to quit. He said he didn't believe that there was anything that he could do for him and suggested that we take it out and 'make him comfortable' or get him somewhere where the Myeloma could be treated. We talked about that at length and I explained to him that I was waiting for the oncologist on call to be making rounds so I could get another opinion than our own oncologist having us be overly cautious and wait more and more. He asked me if the oncologist was there. I didn't know what this doctor looked like, but I did see someone that I think looked like a doctor and called his name.

The doctor was nice enough to come to the phone and I apologized for putting him on the spot and told him who I was and who was on the phone. He spoke to the renal doctor for a few minutes and then turned to me. I asked him if we could talk when he had time. He said he had time right then and there so I filled him in on a brief history of Pete. He didn't waste any time in stating that Pete needed to be in Little Rock. I explained that we had been trying to get there all week and he was getting worse and worse and no one would let us get there.

We met and talked again after Pete got back to the room. At first the doctor thought that we had a flight lined up to get us there via air ambulance. When the nurse explained to him that the social workers had found that insurance would only cover the flight to the nearest facility he was concerned. I chided in that I had no problem in loading him in the car and driving him directly to Little Rock myself. He considered that and said that the best place for him to receive care would be Little Rock. He explained that there was nothing left for him in Roanoke and staying was just treading water at best and leading him to the end.

We agreed to look at the labs in the morning and then release him unless something turned worse overnight. We were both surprised and elated. If we had just been allowed to leave at the first of the week we would have been in Little Rock and been treated before his kidneys failed. 'If' is a big word that we've been using a lot lately.

Saturday I wanted to stay until the nurse shift and then go home and start loading the car and finishing up packing. The nurse shift came and went and due to some admissions and other patients' conditions, the nurse didn't come in until 10:00. I was falling asleep. I left and went straight home to bed instead of getting ready.

Sunday I was up early and had two phone calls from concerned friends and family and then was off to the hospital at 7:30. Peter said that the renal doctor was in to see him earlier and told him that he talked to the oncologist and agreed that the best course of action was to release him and send him on to Little Rock.

We had to wait almost all morning to see the oncologist and get the clearance to go. We really liked this doctor. He reminded us of the traits which made us feel comfortable with our original oncologist that has since retired. Perhaps it will be possible to switch to him when we return.

It took until early afternoon before the paperwork could be completed, the catheter could be removed, and his port flushed and the needle removed. We went home so Pete could take a much needed and deserved shower. He had been in the same gown and sheets during his whole stay at the hospital.

I finished up everything that was possible and we left Sunday evening for Little Rock. We drove straight through with two stops for naps and a stop for gas. We got 32 mpg out of the first tank since 82 miles of that had been in the city going back and forth to the hospital. We got 38 mpg out of the second tank on the flat. I ran 70 mph the entire way. I was interested in speed and not extra fuel savings. We we sitting in the clinic at the University of AR at lunch time on Monday.

Our patient coordinator went above and beyond and made everyone possible known of the urgency of this matter and this trip. I had emailed her Sunday and called her first thing Monday from the road.

We had some delays while a doctor decided that he needed lab work to be sure he needed to be admitted. We spent the afternoon and early evening in the clinic while a room was secured, made ready, and transportation in a wheel chair could be arranged. We closed up shop as everyone went home for the day save one last employee that waited until we were taken to the hospital.

This place is huge. That's an understatement. No one has a map and following behind the transportation person that is pushing the wheelchair had me running so fast that I couldn't look at where we were going.

The room is older, but nicely laid out. For the first time ever I can literally live here with Pete. There is a futon that folds flat to make a very comfortable bed. There is a refrigerator and a coffee pot. There is a huge flat T.V. There is a large bathroom with a big roll-in shower like I envisioned in our future house.

Down the hall is a kitchen for patients and families. It is very much the opposite of the type of treatment we received in Richmond. When we were at MCV, they told us we had to bring our own cooler of our own food, drinks and snacks each day. Here they have a refrigerator in the room, but also a kitchen stocked with frozen dinners and desserts, drinks, juices, puddings, jello, yogurt, milks and such in the fridge part and cupboards full of cereal, meal replacements, soups, crackers, and a host of other items.

We had a rough first 24 hours trying to get everyone up to speed, understand who's who, and make everyone understand why we are here, what we've been through, and what we expect.

I think we are over the first hurdle. We have had two rounds of residents, students, fellows, and attending physicians parade through as well as physical therapy, nutrition, and probably a few more that I've even forgotten.

Because of the length of time since the tests were done and the time literally wasted at the Huntsman, all the tests need to be done again and will be compared to their tests. As a real kicker we got a bill for several thousand dollars from Huntsman as we were leaving. They have their nerve!

Between today and tomorrow Pete is undergoing the battery of tests that he's done before and others. I've learned a number of things that I didn't know as well as been told that some things we thought we knew well are considered wrong. Different school of thought.

Pete will have another port put in for the stem cell collection and perhaps yet another one for dialysis. They need to get his kidneys in better shape and get the creatine down so they can work on their own in order to handle whatever chemo they decide to give him.

After they complete all the tests, the oncology team will analyze his genes and analyze all the test results and come to us with our options and their recommendations so that together we can make a plan. I hope that this time next week we'll have some idea of what we're doing and how long it will take.

Saturday, 9/20/08

I am emotionally wrung out as I write this. It has been an unbelievable day.

I arrived this morning to find Pete gone from his room. When I inquired I was told that he was taken to dialysis. Both doctors specifically told me that he would not receive dialysis over the weekend both to give him a break and to see what his kidneys would do on their own.

I went ballistic. I have had enough of mis-communication and mistakes. The nurse responded by calling the doctor on call in the dialysis area. It was the same doctor that saw Pete early Wednesday before I was even aware there was a problem.

I had two different conversations with this doctor through the course of the morning. By the time I had arrived he had already been in dialysis for 2 hours. The dialysis was to lower his electrolytes, not to have any real impact on his creatine level.

We lucked out in that the oncologist that was on call for the weekend was on the floor and was a lot like our original oncologist. He was a good listener and had good responses.

All week we had been telling everyone that we need to get to Little Rock and Little Rock has been calling all week trying to initiate getting him to them. This oncologist boiled it down as did the other doctor on for the weekend.

We have basically two choices. One is to do nothing and make him comfortable to die. The other is to go super aggressive and treat the Myeloma in Little Rock. The oncologist agreed that Little Rock is the best choice for him. Sitting here waiting all week is just treading water and pointless. Finally, someone who gets it.

They pulled the port out of his groin late this afternoon and gave him platelets as well as keeping pressure on the area to prevent bleeding.

His creatines are getting worse by the day. Without either dialysis or plasmapherisis his electrolytes will begin going up and he'll be in bad shape. He'll lose his mental abilities again and his heart will be at risk of stopping or beating irregularly. That means we need to get to Little Rock fast.

After some discussions between the doctor and social worker, we are going to look at his labs first thing in the morning. He hasn't agreed to it, but he is at least open to the possibility of me just driving Pete to Little Rock. He would be more comfortable if several people were transporting him. The best case scenario would be an air ambulance, but Medicare will only fly him to the closest facility. The social worker wants to try to hear back from the air charities, but he would have no medical personnel on board and would have to walk to the plane and up the steps, which would be difficult.

That is the only reason that the doctor would even consider me driving him there. I could have him there before the social worker would even be talking to any of these charities. And I know from my experience with the air charities before that this is not going to be a sure thing or a quick process. I'm not very hopeful about them.

Pete was at least alert enough for some time this afternoon to verbally tell the doctor that he wants to fight, he wants to go to Little Rock, and he wants us to just go ourselves. So we'll see what tomorrow brings. I'll get everything ready by the door again to leave if we get the word.

He would like the opportunity to take a good shower at home and not go somewhere like he is.

Tonight he's had some morphine to offset the pain from the removal of the port and the pressure that was placed there for 4.5 hours. He'll sleep through the night well.

Friday, 9/19/08

More plasmapherisis today. Creatine is going up, but calcium is back to normal and other concerned numbers are coming down.

Pete is sleeping all the time.

Little Rock called to say that they had managed to get us into a hospitality house for Sunday night, but I explained that we were not coming then. So, we lost our spot. We'll have to try again when the time comes.

Unless there is a problem over the weekend, Pete will have a break from dialysis and plasmapherisis. They want to give him a break as well as see what his kidneys will do on his own.

He still has no appetite and trying to convince him as forcefully as possible to eat just a few bites of something or to try some meal replacement drink is tiring. He has managed to drink a little bit.

He just wants to sleep.

I'm trying to juggle my schedule to be able to do some work while at the same time not know where I'm going to be for any length of time. We are really in a state of limbo right now and we badly need some money from some work of some sort. The fundraising account has reported that there were no donations to help with expenses. We've sold as much as we can quickly sell.

We will take each day at a time and see what next week brings. I probably won't update anything over the weekend unless there is a change.

Thursday, 9/18/08

The dialysis and plasmapheresis yesterday helped bring the creatine, calcium, and potassium down enough that Pete knew who and where he was today.

He is very tired and just wants to sleep. He had dialysis all morning and blood transfusions all afternoon and evening immediately followed by plasmapheresis. He was taken off restrictions of no food or water. He had a little to drink and a few sips of some soup, but just wants to sleep.

Friday he will have plasmapheresis only and more transfusions if needed. He will have a break from dialysis Friday through Sunday unless there is a big problem. The doctors want to see if his kidneys will do anything on their own.

We will re-evaluate everything on Monday and decide then what to do for next week.

A hospital to hospital transfer was suggested, but in investigating this via air ambulance, Medicare will not cover this except to the closest facility. Therefore, in my mind, the best bet will be to get him well enough and strong enough to drive out there as we had planned.

Kidney Failure

Pete's kidney's completely shut down Tuesday night. No one called me. I went to the hospital at 7:30 this morning and found that his kidneys were doing nothing but passing water and not getting rid of any electrolytes. His potassium, calcium, and creatine were doubled between being taken at the clinic on Monday, being admitted on Tuesday afternoon, and then again very early Wednesday morning.

At this point dialysis and plasmapherysis are the only two chances to reverse this.

I've just returned home and it's about 1:00 am now and I must get some rest. It's been a very long day and I don't know what tomorrow will bring.

We will not be going to Little Rock anytime soon from the looks of it. Will post more when I know more.

Tuesday, 9-16-08

Too much confusion in Roanoke and I'm a little aggravated. P.A. was supposed to call me back last evening to tell me if she was able to get approval to admit him overnight. Didn't hear a thing.

Got up super early this morning to have my car serviced at 7:30 and get home for a conference call on Autodesk University.

I called the clinic, but all I can do is leave a message which I did. Received a call from Dr. at 11:00. She was wondering why we didn't go to the hospital last night! She claimed all arrangements were made and that the hospital staff called her when we didn't show up by 11:00. Why wouldn't someone call last night or certainly first thing this morning to see if we were even O.K.?!!!

She said she would call me back. Wait, wait, wait again. Lots to do. Finally hear from her about 12:30 or so and she says to bring him to the hospital and not the clinic.

I woke Pete up and got him dressed to go. I still don't think he understood where we were going. Yesterday when we went to the clinic he thought we were on our way to Little Rock.

I got him checked in and made sure the nurse understood everything and would call me if there was any change in plans at all. Then I returned home to furiously try to take care of the last few things that I could manage and perhaps begin packing in the morning.

Because his calcium is so high, they want to give him fluids over 6 hours and then a diuretic to flush out his system. Then they'll give him Aredia to try to reduce the calcium.

I'll pick him up tomorrow morning. I don't anticipate that it will be timely, but I'm hoping to get out of town by noon so we can get 8 hours of driving in before stopping for the night.

Leaving Early

As mentioned in the last post, things have gotten much worse. Pete has been drugged since last Thursday/Friday. He's taking morphine now as of last night and it is helping better than the oxycodone. Either way, he's just taking as much as allowed to knock him out and let him sleep.

Little Rock said this morning to bring him on and check with the local oncologist. The local oncologist wanted to see him in the office this afternoon so we just returned home from labs. His red counts are down and his platelets are very low. I expect that his creatine will be through the roof, but those won't be back today to tell. The labs will be sent on to Little Rock.

Hold the phone...the clinic just called and have his labs back here. His creatine is high, but it's certainly been higher. His calcium is very high, but as I explained I've been giving him 1200 mg. of calcium every day per the doctors orders at the Huntsman Institute and confirming this with the oncologist here.

This is the second time that I've been told to give him calcium in the past two years and both times I have questioned it because I understand the impact on his kidney function. The first time was in Richmond when the nurse coordinator there insisted on me giving him calcium even after I raised the question and I later was chewed out when he was admitted with high calcium and poor kidney function. Now the same thing has happened with this doctor at Huntsman. I guess at this point I will just flatly refuse in the future.

Now another call has come in that they want me to bring him down in the morning to receive fluids and Aredia. The Aredia will help take the calcium floating around in his system now and put it in his bones or get rid of the excess.

Normally this would not be a problem. But right now, I have cancelled today's car appointment because of taking him down to the clinic and if I don't get the car serviced in the morning, then there will be no time to do it before we leave. This must be done!

Even though Pete always refuses to go to the hospital, I have asked that they admit him overnight and hydrate him and give him what is needed. Then I can take care of things tonight and in the morning and pick him up in the afternoon tomorrow. It's sort of a request for daycare. I know he's going to hate me for it.

They are concerned about his mental confusion with so much calcium (it's at 12). I already explained to him that he is very confused. He's done a couple of things in the past week that have made that quite clear to me. I won't relay them here as it would be too embarrassing to him for others to know.

Pain worsening

Peter is in some of the worst pain I have witnessed over the years. I have been keeping him comfortable with strong prescription pain killers to put him to sleep and ease the pain on a temporary basis.

Trying to get him to eat or drink even a small amount is very difficult. He has no appetite and is too tired to try.

I am going to contact the doctors Monday and inquire about either bringing him immediately to Little Rock or having some intervention here in Roanoke.

I'm not ready to leave town on a long term basis yet and have actually turned away some help this weekend just because I have some things that I need to do myself and need peace and quiet to concentrate and make sure I get them done and done right. Plus I have my hands full with Pete right now as it is.

Fundraising Underway

It's a little late to start and it's taking a long time to get to this point, but with the help of the National Transplant Assistance Fund (NTAF), we now have a secure way for anyone to make a donation for the expenses we are going to be facing with the upcoming transplant.

If you'd like to make a donation, or forward the information to anyone else, please visit this page.

We sent out emails this evening to everyone I could think of to send one to in hopes that some of you may know other people willing to help and not feel obligated to make a donation of your own. We appreciate all the help and support we've been receiving and all the prayers.

Peter is really feeling terrible and these last few days until we leave and the trip are going to be tough. Last week and this week he's been more tired than I've ever seen him. He just sleeps almost all the time.

He's also in a great deal of pain and using the maximum doses of pain medication just to be able to get some relief to sleep.

I'm overwhelmed with all the things I want to have done before we leave and worrying about a long list of things. I'll feel very relieved once he's been seen by the doctor and tested and we get started on something.

I'll keep blogging as much as possible.

Thanks!

Bye, Bye Salt Lake City...Hello, Little Rock

It's been a heck of a week. I was pushed to my breaking point dealing with two coordinators at the Huntsman and sent off some irate emails. I've just had enough. I felt as if I exploded and just couldn't take it anymore.

Our local oncologist had recommended us to Little Rock Arkansas and the University of Arkansas Myeloma program. Normally the protocol would be for us to visit there, undergo testing, meet with the doctor, and determine a plan to schedule. Since we spent all our savings on the trip to Huntsman and are running out of time on Pete's current status, this luxury wasn't going to be possible.

This week Pete ended up in the hospital. He had been feeling crappy all week and Wednesday he slept all afternoon and evening. It's unusual for him to go to bed in the middle of the day. When he got up about 8:00 or so that evening I noticed that he was very hot to the touch. I immediately took his temperature and found he had a temperature of 101.6. After a call to the doctor on call it was decided to take him to the hospital. After much digging in of the heels and refusing I finally was able to get him there.

By the time we arrived he was soaked in sweat and his temperature had come down on his own. He was still badly dehydrated and the fever came from some infection so they kept him for two days and nights and gave him plenty of IV fluids and antibiotics. He arrived home about 8:00 Friday night and will be taking antibiotics for the next 10 days.

Friday I confirmed our appointment with the University of Arkansas. We are scheduled to be there on September 22. He will need to have a few tests, but most of the tests from Huntsman will be used. He'll see the doctor there on September 25 and treatment will be customized to him based on what medications he's already tried in the past and the gene study that they will do. As I understand it, they will be able to tailor drugs to him.

The medical staff at Huntsman was the best and I have no doubts in their abilities. We loved Salt Lake City and would have enjoyed our stay there immensely. The rest of their staff has just made too many mistakes, has had to be reminded of too many things, have failed to answer us in a timely manner, and have consistently provided valuable information too late time and again.

I am very thankful that a greater power has taken over and Little Rock is welcoming us with open arms. I'm sure they will have their own shortcomings at some point, but they can't be nearly as bad as Huntsman was.

We still need assistance with living arrangements while we will be in Little Rock as we'll need to pay our bills here and a pet sitter as well as living expenses there. They have already jumped on the bandwagon to help us in Little Rock. In addition, we should be set up very soon with a charity organization that will accept donations into a special account just for Peter to pay for such things and the organization will pay these expenses directly for us. As soon as I have the exact link for donations I will post it here.

We've been very fortunate to have help from some good friends in helping prepare things before we leave and in providing a temporary home for our dog. Thanks so much for all you've done to help. You know who you are!

We will be driving out on the Thursday before our visit. It's a straight show right out I-40. And it's only 4-5 hours to my mother and grandmother in Tulsa so we may have a chance for a weekend away during breaks.