12 Days Home

Dear Fods,

Sorry for the delay in posting, however, Debbie's condition is not clear. After the transfusion last week her counts have held or slightly improved. Whether this is another rally or turning a corner is not known. Her platelets were 8 when she was transfused last week; they were 22 on Friday and were 25 on Tuesday. Definitely going in the right direction. Also, there has been an improvement in her liver enzymes and her WBC has fallen from 117 to 60 without any hydria.

That said, Debbie is asleep approximately 85% of the day. She is heavily medicated via baseline and push pain pump; catherized; and not able to get in or out of bed without much help. She has taken on a huge amount of fluid and it is not coming off easily. This is making her more uncomfortable and she is now "seeping" from the sides of her hips. Apparently, this is the way the fluid leaves the body when other functions are not sufficient. This seeping is a new cause for concern as her skin is beginning to break down and we all know about Debbie's famous rashes. We are watching closely for bed sores. We found pads to put over the chucks to keep the bed dry and they need to be changed a few times a day -- usually @ 1:00 or 2:00 in the morning!

Jester was here last week and set up many of the care protocols that have helped Debbie after the devastating ravages of the lower regions last week. That has cleared up and Debbie is more comfortable. This week Nurse Edie, Debbie's roommate from Nursing School, came up from Roanoke on Sunday and stayed with us until today. Tonight Kris is coming in from Colorado and will stay until Sunday. Jester will come back up on Sunday and plan to stay for a while.

The boys have been champion care givers over the past days. With Mike's shift work and Joey's devotion to Debbie, we have been able to have 2 men in the house at all times to move Debbie in and out of the bed when it is necessary. They have also stood up to perform chores with the commode, foley bag, etc. that are above and beyond the call. Everyone is pulling hard for Debbie.

Once again, there is no care plan for Debbie because she is off the charts again in "no man's land". We started lasix yesterday to help with off loading the fluids and she put off more fluid today than yesterday. Debbie was out of the bed today for about 1.5 hours with help from Joey, Mike, Edie and Donna. She ate some solid food and compared to earlier days had a good day. For one of us -- a half marathon!

Thanks for all of your cards and blogs. We read them to Debbie when she is awake.

Debbie sends her love to all.

Friday Update

Dear Fods,

It has been a very difficult week with some ups but mostly downs. Debbie asked to leave hospice on Tuesday in order to receive blood products -- she needed platelets. This was arranged by HUP and Aetna and we had an ambulance transfer from 912 to HUP and back. HUP and Aetna have agreed to support Debbie in any way that they can, which is truly extraordinary.

While this type of transfer may sound simple, it was a Chinese fire drill gone amuck! Since Debbie is still not ambulatory, this required 3 burly men carrying her strapped to a chair up and down the steps, a special entrance at HUP where all of her friends took very good care of her. She was wisked to a private room in the Lab and Claire and Heather took excellent care of our Debbie. That was the fastest in and out in HUP history. The burly boys got Debbie back to her bed and her platelets are holding @ 22K.

Debbie appears to be filling with fluids again over the past two days even though she is putting out a constant amount. We expect that her breathing will again become labored if this fluid retention continues. Debbie is heavily medicated and is pretty much out of it now. She did ask to see a priest today and he will come by tomorrow.

The kids have been a great help -- staying with Debbie and helping her in every way possible. Her coverage is constant and it could not be done without them.

There is not much more to do or say -- we believe that the end is fairly near.

Thank you for the cards and blogs. We read them to her whenever she is awake.

Debbie sends her love to all.

Still Fighting

Dear Fods,

Remarkably, Debbie seems to have turned one corner on her way back to us. Her organs appear to have come back on line -- with a vengeance -- and she took some solid food yesterday for the first time in a week. While she is still very weak, she is very alert and coherent. She is now complaining about wanting to take a bath!

Dr. Porter called yesterday afternoon and we spoke again this AM. They are going to send a nurse to draw blood today and see where we go to next.

Debbie sends her love to all.

Headed Home

Dear FODs,

I spent the night here with mom and early this morning the entourage of doctors came in to discuss mom's condition. While there is some uncertainty as to the severity of the VOD and if that was an accurate diagnosis, there is one definite fact from today's discussions. Mom's most recent labs showed rapid development of additional leukemia cells (>50%) and the disease continues to progress despite the latest round of chemotherapy, Mylotarg. Mom's liver is in danger of failure, but the next few days will tell for certain if the damage is reversible. Irregardless, mom's tired body cannot tolerate further treatment to manage the leukemia. Mom was very clear that she no longer wishes to suffer and wants to come home. The lovely team of doctors, nurses, and administrators (one angel in particular) are making that happen for us tonight. Mom will be transported via ambulance to Tennis Way and will remain there under hospice care. Blood and platelet transfusions and the administration of antibiotics will cease upon discharge from the hospital. We'll be coming home with the pca pain pump of fentanyl and some oxygen to assist with mom's labored breathing. The goal moving forward is to keep her as comfortable as possible. From what I've witnessed these last 24 hours, mom's pain is adequately managed and she is resting peacefully most of the time. While awake, she cannot communicate very well, but attempts to ask questions that ensure she is still coherent and follows what is going on.

The doctors are hesitant to give us a time frame at this point but based on what we've read we do not believe we have very long. We plan to take this weekend for some "Teklits Time" and stick together surrounding mom as a family as much as possible. Please respect our need for privacy with this difficult and tragic turn of events. It has been a long and very tough fight for mom, and she truly has been relentless through it all but our dear is exhausted from her battle. We hope and pray things will continue to remain peaceful for her through the end. We will keep you posted as things progress and please know that we deeply appreciate all that our army of Debbie supporters has done for our family during these last three years. We are grateful to have such wonderful individuals that make up our extended family. We love you!

Jessie

More Complications

Dear Fods,

Debbie continued to deterioate today and she is taking on fluids even though they stopped giving her fluids. This complication is caused by a new problem called VOD (veno-occlusive disease). I looked this VOD up and it does not look good -- but it does describe Debbie's current condition. It says:

Veno-occlusive disease is a potentially serious liver problem caused by the high dose of chemotherapy. In patients with VOD, the blood vessels that carry blood through the liver become swollen and obstructed. This impairs the liver's ability to remove toxins, drugs and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness of the liver. The kidneys may retain excess water and salt, causing fluid to build up in the body and swelling of the legs, arms and abdomen to occur.

In severe cases of VOD, build up of fluid that has leaked into the abdominal cavity may also put pressure on the lungs and impair breathing. Toxins that are not processed out of the blood by the liver may affect how the brain functions and confusion may result.

In order to help Debbie's respiration, they did an abdominal tap and drew 1 liter of fluid from her abdomen. So far today she is incontinent and out of it. While she tries to talk, she cannot speak, or get out of bed. We have a commode in the room but that now is a 2 person job. I have been with her this afternoon, Mike was here in the morning and is on his way back, Jester is coming up from her training in WVA and will cover the evening. We will do a similar rotation tomorrow. On Saturday, I will get Joey and prepare him for his visit with his Mom.

I spoke with Dr. Porter today and he is hopeful that the VOD will reverse itself and we should know that in the next day or so. Debbie is very uncomfortable and her legs, ankles and feet are now swollen as well. Porter also said that the Mylotarg failed and that there are leukemia cells in her blood. At the moment, however, he is most concerned about Debbie's breathing and the VOD. If the latter does not reverse itself soon -- we will need to go onto HUP's Home Hospice, in compliance with Debbie's directives.

Will keep you posted.

Debbie sends her love to all.

Peaceful Day

Dear Fods,

Debbie had a more peaceful day today, thanks to the pain drugs. She has her own pump and has been sleeping most of the day, either in her bed or in her recliner. Because of the fluids, she has been on oxygen for the past 2 days and the slightest exertion has her hyperventilating. She has also been fever free this afternoon which is the first time in a long time. Still no food today and they will start the TPN tonight. Hopefully, the nourishment will help her to turn the corner.

I know everyone would like to visit or call, but Debbie cannot carry a conversation and she needs to sleep. She really is having trouble breathing and the talking only exasperates the problem. Mike and I did discuss some extra visitor coverage with Debbie but she said that she is just not up for it. She is still very uncomfortable with all of the extra water weight, although they did stop the saline today. Hopefully, she can start going on her own and she get some of that extra weight off. She has literally gone from her XL jammies to 3X jammies since Sunday. Actually, the jammnies are too much for her to wrestle with and she is in the hospital gowns.

I met the attending today and he seemed like a nice, caring man. Unfortunately, he was not too encouraging. He said that Debbie's WBC is 19 -- not a good sign and he sees 40 % leukemia in her blood. He was suggesting that the leukemia may have taken over, although we would want a more conclusive test before resigning ourselves to that conclusion and she needs a few days of nourishment. He also said that Debbie's liver enzymes are off the charts, which is to be expected with this chemo. There is now a concern that the TPN could further exasperate the liver problem. They will be monitoring Debbie's liver enzymes and sugar level on a daily basis and react accordingly.

From a purely layman's perspective, I am sceptical of the counts because they are measuring a person who has been starved for the last 9 days. She has not eaten anything since last Sunday and that was some (very little) chicken and rice soup. That has to have an impact on "counts". Also, I have been reflecting that chemo has always hit Debbie harder than a normal person. She goes down further and stays down longer than their medians will allow for. I am hoping that with some nourishment and careful antibiotic management, Debbie will start climbing out of the pit she is in now.

Thanks for all of your blogs and cards. We read them to her every day -- even though she sleeps through most of them. She can read them again when she gets home and it will all be new again.

Debbie sends her love to all.

What can go wrong did! And then it did again!

Dear Fods,

This has not been a good two days for Debbie. For the typical, unexplained reasons, she continues to spike high temperatures, erratic BP, rigors, vomitting and she has taken on 30 - 35 pounds of water weight. The latter is caused by the high volume fluids that they running into her to control the BP. There was another ICU scare yesterday. Mike was here and he did an excellent job of keeping everyone calm. The nurses and Cava commented favorably about him. He called me at the office and I left @ 12:30. Debbie had been given fenergin and she was picking birds out of the sky and talking incoherently before I got there. Thereafter, she was just loopy for the rest of the afternoon. They took her down for a CAT scan to check her abdomen -- which looks like about 8 months -- for any blockages. The results did not show any blockages but did show an enlarged spleen, which is most likely due to the fluids. Also her liver enzymes are out of wack.

Debbie's enlarged abdomen is very painful and they gave her a fentynol pump to ease the pain. She has been mostly sleeping this afternoon. They did an ultra sound this afternoon to see if there is any pocket of fluid that could be tapped and drained to relief the pressure and pain. Those results are not back yet.

Still no appetite -- has not eaten anything again today, but no one seems terribly concerned.

While you can try to call, unless one of us is in the room, I don't think Debbie can answer or speak on the phone. The pain meds are doing what they are supposed to do and she is mostly out of it. I took off today and will take off tomorrow to tend to her. Hopefully this will get turned around soon.

Debbie sends her love to all.

Just Missed ICU

Dear Fods,

We had a close call this morning. My BP has been very low this time and they have been having a hard time stabilizing me. They decided that it would be best for me to be moved into ICU. The kids told Joe while he was on the way down and stuck in traffic. He got here while I was in the bathroom and just as the resident came in to speak to me. Joe rather forcefully explained why we did not want to be moved into that terrible environment again where we have never had a good experience. We asked for some time to speak among ourselves privately and we began to pack up the room (another HUP practice which is infuriating). The resident came back in and spoke with Debbie and she again explained all the reasons why she refused to go. She asked what would they do more for me upstairs than they would do for me here and he said that they could give me dopamine that would make my BP go up. I told the resident that my HGB is only 7.9 and I need blood! Not ICU!! My heart rate is elevated because I need blood and have had a fever since I got here. Give my tylenol and not ICU!!

The resident came back in and said that I could stay here and that they would keep a close eye on me. So now, they are giving me tylenol every 4 hours and they just hung a unit of blood. Just what Dr. Teklits ordered! The resident came back in and said that it looked like I knew my body better than they did.

So needless to say, I am sitting here getting my blood and high rate fluids and puffing up again like the Pillsbury dough boy, have probably put on 20 lbs of fluid since I got here and I have not eaten anything for a couple of days -- am just too sick to my stomach. They are giving me reglan, four antibiotics, and adavan. And this was supposed to be a 24 hour stay!!! Anyway, glad to have ducked that ICU bullet for now.

Thank you for your blogs and cards. Someone reads them to me every day.

I love you all.

Debbie

Still here...still....

Well here we are, it's Saturday, Joe and Jessie are here to keep me company as I look to spend my weekend here at HUP. The doctors said I could be discharged if I remained fever free for 24 hours but I have yet to make that criteria. In fact, my temp soared today to a whopping 103 - the highest temp since Tuesday.

My ANC is up to 600 and my WBC is 2.5, which is up from yesterday's counts of 400 and 2.1 respectively. My platelets have been steadily dropping, but are still at 20k which is too high to warrant a transfusion. My HGB is 8.9, so it is likely I'll need both blood and platelets before they discharge me otherwise I'll be right back down to clinic.

At this point they have a whole cocktail of antibiotics going via IV. My blood pressure is dangerously low so they added continuous IV fluids to keep that in check. My most recent set of blood cultures are negative and they just poked their head in and let me known that my lactic acid came back a '1'. The nurse tells me this is a good thing and indicates there is no big bacterial infection going on in my body. They always worry about pneumonia and sepsis when these fevers spike like that and I believe this means I've managed to avoid both for now.

They had to start reglan so that I could attempt to eat - I have not been able to keep anything down since I got here. I had a few spoonfuls of cottage cheese today so that's a step in the right direction. I've been having trouble with my feet, a bit of gout they think so I'm forcing myself to walk a little but can't go too far. Since I'm up most of the night I'm sleeping during the day as much as I'm able to.

I'm anxious to get home to my own bed, my nice bath tub, and recover from there. Things always seem to spiral out of control when I get admitted, this time is no different. We're holding on to a possible Monday discharge, of course that depends on a lot of things that are out of my hands. I know once I'm home I will feel much better and will be able to manage those darned fevers.

Congratulations to Emily and Colin for serving on the homecoming court recently and to Jimmy, the North Penn homecoming king announced last evening. That's awesome for you guys and one day you'll have great memories. Bridget, how lovely to hear from you, I'm glad that all is well at Lankeau. Thanks for the well wishes from your mom. Donna, it's hard to imagine that Mackenzie weighs nearly 24 lbs at nine months. That has to be off the growth charts! Thanks to everyone for your phone calls, cards, blog messages, prayers and thoughts. They all mean so much to me and my family.

Love,

Debbie

Still here...

Hi Everybody, what a surprise, my 24-hour visit to HUP has turned into five days! I'm still being held captive here. Low grade fevers persist and my white count is becoming dangerously low. I feel ok, but much like I have the flu. Most of the worst side effects, ie. the high fevers, rigors, etc. are gone but the nausea persists.

Mikey has been down to visit each day and Joe comes to see me each evening. Today, who comes walking around my drawn curtain but Jessie. She left the kids behind with Walid and came to visit, which hopefully will be a help to Mike and Joe. She's always great company for me.

I'm hoping if the fevers can stay down below 100 for the next 24 hours they will let me go home provided I obey very strict house arrest orders. My platelets are down to 25k, which means a transfusion will be needed in the next day or so. The nurses here tell me I'll be platelet dependent for about the next month.

It was good to hear from all of you on the blog. Thank you for your prayers, calls, and cards, and I will keep you posted. I love you guys.

Debbie

New Treatment -- Mylotarg

Dear Fods,

Hi everybody! I am sorry to be late getting back to all of you. We saw Dr. Porter last Monday and he was concerned with my counts and he looked at my blood under the microscope. Unfortunately, he saw leukemia in my blood. He did the dreaded BMB and said that we needed to change the course of treatment from dacogen to a new drug. The dacogen may have stopped working. He is also concerned that the dacogen may have caused my hearing loss.

I was scheduled to be admitted on Monday morning to receive mylotarg which is called a monoclonal antibody. This is a targeted chemotherapy drug which goes directly into the leukemia cells. Somehow the BB 33 antibody from the mylotarg attaches to the BB 33 antigen that is only found on the surface of the leukemia cell. The drug then enters the leukemia cell and destroys it. This drug is intended for older patients who cannot tolerate the "big gun" chemotherapy anymore.

Before we found out about this new leukemia regime, we had long planned a Pocono weekend with my girlfriends from ICU. Mentally, I needed this break and I knew that I will be out of circulation for a while after this new treatment. Jessie and Allison were bringing the kids down for a visit because I will have lousy counts for the next month or so as I recover from the mylotarg. Mo, Bev, Lee and I went up on Friday afternoon. It was glorious, the leaves were in full color and it was cold. Some of the other nurses came on Friday night and we had a "whooping" time. Picture 18 nurses in their 40's, 50's and 60's. On Saturday morning, the surgery nurses came with Jilly, Bonnie and Kathy Moore. We had a hearty breakfast and more laughs and then I headed home to see the grandbabies.

We had so much fun with the kids. We went to our local farm and did hay rides, haystack mazes, sliding boards, and we picked up some pumpkins. It was a blast. Pop Pop carved 3 pumpkins for the kids and they enjoyed them a lot. They took them home with them on Monday. We came home and did more crafts, painted by numbers, made cupcakes and told stories. Izzie is almost walking. She takes about 5 steps and then sits down. Any moment now she will be gone. She still never cries and sleeps like a champ. Christian and Emma are getting cuter every time I see them and it is fun to read them stories to get them to sleep at night. Allie left Monday morning and Jessie stayed to see what was going on with Penn. But as of noon time, HUP did not have the BMB results so we had to sit and wait at home.

It took until 3:00 PM to get the BMB results and they were not too good. There was 35% blasts in my blood which is not good. We came in an were admitted by 5:00 and then waited until 11:00 for the chemo to arrive in the room. You have to be an inpatient for this chemo because the infusion can cause an allergic reaction causing high fevers, rigors and nauseau. Despite being pre-medicated with tylenol, benadryl, zofran and steroids, I had all of the reactions. They started the infusion at 11:30 and I did fine until 3:00 AM when all hell broke loose. I had terrible rigors, vomiting and my fever went to 104. My nurse Kelly was right here but it took a while to get things under control. Of course, then I needed blood cultures, urine cultures and a chest X-ray to make sure there was no infection -- and there was none.

I was hoping to go home today, but just now got my temp down to 100. I am hoping to go home tomorrow, however, my liver functions and uric acid levels have bumped a little -- but this is expected with this drug. Dr. Porter is being his old cautious self but is taking good care from me. The drug comes with very strong warnings from him not to fool around with the fevers once I get home because this drug can cause large drops in your WBC.

Please say a prayer that I can stay out of here. Your prayers have kept me going for the past three years and I am convinced of that. I am supposed to have another BMB next week to see what the mylotarg accomplished and then they will decide if we get another round of the drug.

Of course, the house is torn apart now with the painter in the living room, foyer, etc. I did not want to cancel him -- but Joe is none too pleased about HUP and construction at the same time.

Congratulations to Colin to be on the homecoming court and Brendan -- yes the pressure is on! Mer -- congratulations on Madrid. Spain is beautiful and what a wonderful experience. I wish that I could come along. Visitor Allison have a great time in Vegas and we hope you hit the big jack pot. It seems that you had a good time this summer with relatives from Ireland visiting. Kris -- enjoy the Colorado weather before the snows come. I hope you had a good time in Hawaii at your nephew's wedding. Cheryl -- your girls sound wonnderful, you must be so proud. Not to worry, I think that you will have grandbabies before you are 60. Glad you like you job.

To everyone else, thank you so much for your beautiful cards and calls. Enjoy this great weather and I (Joe) will write again soon.

Love to All,

Debbie