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The Hospital Room Journal

Tuesday - July 10, 2001
Long day in Philly. Sally had a bone marrow biopsy followed by four hours of being measured for radiation body blockers for pre-transplant regimen starting next Monday. I read every book in the waiting room plus the wall posters. Made coffee, wiped the tables down. Cytoxan starts Saturday. Oh boy! Went to a restaurant across the street and we got authentic Philly cheese steaks.(yum) Saw a great cast of characters downtown. One guy with colored underwear on his head shadowboxing in a storefront, hmmmmmm, panhandlers etc. Met a lot of nice people too!

Thursday - July 12, 2001
We had to return to TJU for more measuring for radiation body blockers. Since we had to be in Philly at 8:00am Friday we decided to spend Thursday night at the Holiday Inn Independence Mall. Sally's appointment gave Brittany and me some time to explore.

After we explored the old part of Philly we picked Sally up at TJU and returned to the Hotel. At 7:00pm one incredible friend arrived at the Hotel from Dayton, Ohio. Moe Benoit dropped what he was doing and flew in to be with us. We took Sally out for a nice dinner on the river at a restaurant called the "Rock Lobster". The weather was perfect and it was a beautiful evening. Several cocktails later we retired back to the Hotel.

Friday July 13, 2001

We awoke at 5:45am to be at the hospital for our first appointment. We received a voice mail that Sally was to arrive at 7:00am for a platelet transfusion before they put her catheter in her chest.

Why are you taking our picture this early in the morning?

Brittany and Sally waiting for the elevator at 6:45am.

We took a taxi and arrived right on time at the hospital. The only problem was the doctor failed to give us the building and room number for the transfusion. This began a search that took us to three different floors. We finally found the right place and Moe and I went to the admitting office where we were told that there was not a room ready yet and we would be notified at the waiting room where we left Sally. Back to that room, more waiting and they finally took Sally in at 9:00am Why did we have to get up at 5:00?? After they took Sally off for her procedure Moe and I took Brittany across the street for breakfast. $2.95 is not a bad price in downtown Philly! We took Brittany back to the hospital and we went to the Hotel to check out. When we returned they were just finishing Sally's procedure and they placed her in a room to wait for the room. The poor girl was hungry so Brittany and I hand fed her while she laid on the gurney. I must say I think she enjoyed that way too much.

Finally at two o;clock we were notified that a room was ready and the transportation team was on the way. The trans team was one guy, so Moe and I provided an assist.

After she was settled into her room Brittany unpacked her bag and put everything away for her. Brittany is 12 going on 18. I call her mini-Mom because she has that Motherly instinct already developed. Everyone was tired after the settling in so we decided to call it a day. I really don't remember much about the drive home. It was difficult to leave without Sally.

Saturday - July 14

I asked the Leslie family to visit Sally on Saturday with me. They are my adopted sister Thelma, John and their two girls Katy and Carolyn. John figured Sally was in a gown with her butt hanging out so he told her to give it a powder. John has a unique profession but I cannot go into that here.

My real Sis is back in Ohio; Hey Linda, wish you were here. Moe decided to stay home because six was enough to fit into the hospital room. He volunteered to stay home and mow my grass as well as be chauffer for Brad and his buddies. There were also some Yuengling's that needed attention. Of course he volunteered to prepare these for my return home. Everyone needs friends like this.

The trip to Philly was typical. Once you get to the Schuykill(surekill) expressway, it is every car for itself. When they are moving. Thelma was in the back seat reinforcing the Smith System priciples with John. A back seat Smith System driver! On this trip John decided we would explore the train option.

When you get to the Bone marrow transplant unit you enter an airlock. The door closes and fifteen seconds pass as the air is exchanged. You then go into the scrub room and scrub your hands like a doctor. When this is finished you put on a gown. If you bring anything in you must wipe it down with antiseptic wipes.

I gave them a tour of the unit. It includes a family room with two love seats, a TV and Sega. A family kitchen set up so you can prepare your loved one a home cooked meal.
There are ten rooms in the unit with six occupied.

This was Sally's first day of chemo. Imagine two IV trees with large saline bags, the chemo bottle hooked up to the shunt in her chest. A catheter connected to her to keep her bladder irrigated. She was also connected to a monitor.
Then imagine possibly thirty days in this room, the effects of chemo and total body irradiation. Throw in the possible GVH symptoms and you see Sally has a tough road ahead. GVH is graft versus host. It has the potential to do some very nasty things. You see, she will have a new immune system that probably won't recognize Sally's body as it's own.
If I ever whine, remind me of this picture and kick me square in the ass.

John Thelma and myself checked out the train info and it looked like the way to go. The traffic is rough going down and they charge a minimun of $15 if you stay all day. The hotel even charged to park in their garage.

We had a nice visit and the girls were terrific. Brittany, Katy and Carolyn are friends and they probably had quite a learning experience.

This is the entrance to the Bone Marrow Transplant Unit. Go through these doors into the airlock, wait fifteen seconds and the yellow caution light goes out. Go through door to the left and you enter the scrub room. Some very special people live and work here.

Sunday - July 15

Sally's second day of chemo. Moe Brittany and me took the train into Philly. Piece of cake. You drive 40 miles to the station but it sure beats the traffic and the parking fees.

Sally did extremely well on the chemo. They gave her nausea medicine but she feels that medicine made here nauseous, not the chemo. The chemo is finished and the bladder catheter comes out tomorrow. Sally is such a cut up. The catheter allows you to urinate without going to the bathroom and as she was standing there she said it was the first time she ever peed standing up.

Moe must return to Dayton today. He will take the train to the airport and leave at 12:52. His real name is Maurice Benoit. He is my blood brother, literally. Dropped everything he was doing to come here and help out.
Yes, Kathy and Kelsey he did his job.

Moe sitting next to Sally in her room. Notice the mask. We all must wear one in the room while her white cell counts are down. To her right are the pumps with all of the goodies that they continously pump into her through her chest catheter. The nurses call it a "pic". At first they said it would be a Hickman catheter now I am told it is a Leonard. Whatever, it is the port through which everything including Sally's new bone marrow will pass. It is good because they don't have to poke little holes in her arms anymore. You should see the tracks!

After Moe left I worked on setting up a laptop in Sally's room. Brittany was exhausted and took a nap in the family room. Sally decided we should leave her alone about 4:30 because she wanted to sleep and she said she was tired of looking at the back of my head.

I set up the laptop so that I could read everyone's guestbook messages to her. She does not like to sit at the computer so I act as her secretary. I am nothing more than her personal slave.(just kidding) The masks are annoying. Hey, what did I tell you about whining!! You see that crap that Sally is hooked up to! Now get out of here and go home.

Monday - July, 16

Brittany and Brad rode the train with me today. Brad is a seat jumper. He cannot sit still. He has his ballcap on backwards and doesn't want to sit with Brittany and me. It would destroy his image you know. The train drops us of at Market East station two levels below the street. You ride the escalator up and you are in the Gallery. The gallery is an underground mall. There a whole new world down here.

We made it to Sally's room around 11:00am after she had her first radiation treatment. What a surprise today. We had to put on an extra gown rubber gloves and a mask. I thought it was for extra precaution because of low white cell count. Actually it is because they think she might have VRA. That is a nasty little bug that lives in the gastro-intestinal tract and effects 50-75% of hospital patients. It is anti-biotic resistant and they don't want it to spread to the rest of the unit. The doctor and four residents came into the room and spoke to us about Sally being part of a double blind study to test the effectiveness of a new treatment for this bug. They tell us it is presumptious at this point and not certain she has it but they take all precaution.

Sally went down for her second treatment at 3:30pm. I took Brad out for a walk over to Independence Mall and the streets of Philly. When we got back to the unit Sally and Brittany were hanging out at the family room. She did not want to go back to her room and get hooked up again. The nurse (Danny)was looking for her and only wanted to check her vitals. She is so cute when she shuffles down the hall and says "no" "no" "no" in a little girl voice, acting as though she is running from the nurse.

She doesn't feel too bad at this point after two days of chemo and two treatments of radiation. Tough little cuss isn't she? Three more days of radiation treatment and she is done with the pre-transplant regimen. She eats her Dinner and we head for the train and catch the 6:25.

When I get home I call her and find that her throat has started to swell a bit from the radiation. It is normal side effect and they say it will go away. They normally give them lemon drops to suck on.

Tuesday - July 17

Sally and I spoke to the infectious diseases lady this morning. Sorry, I dont remember her name. "Hello, I am the infectious diseases lady".......
She wanted to speak to us about that nasty VRA thing. She explained the whole double blind study thing to us. We wouldn't know whether or not she got the real deal or the placebo. Either way, the infectious diseases lady said it tasted really bad. However it was still presumptious at this time and we must wait longer still to see if Sally has the VRA bug.
Brittany and I got much done at home today. Bills, laundry, dishes, pets don't care what is going on in your life.
Sally found out this afternoon that she does NOT have the VRA bug. Thank God. No more rubber gloves and double gowns. Ha, you thought I was only thinking of myself. It is also nice to know that she doesn't have to worry about the possible problems related to this critter. That's about the excitement for today.

Wednesday - July 18

Brittany and I missed the train at Colmar by five minutes. I am never late for anything. It was Brittany's fault. (just kidding) We arrived at 11:00 and Sally was under the blankets shivering. She receives platelet transfusions and it causes the shivers and tremors. Yet she still laughs and smiles. She is turning red from the radiation and tells everyone it is her tan. The next time she goes in we are sending her in with popcorn.
They have a bottle of cylcosporin transfusing into her. I believe this is part of the prep for the transplant. She receives so much fluid yet her mouth is dry because of the radiations effect on her salivary glands. The doctors recommends lemon drops and lemonade to stimulate the glands. It makes eating very difficult. She also runs to the bathroom a lot pushing her IV tree in front of her.
I took lunch in today so that we could eat together in the family kitchen. The hospital food is ok but you need that home cooking now and then. Yeah right. It was leftover hamburger helper from the night before. As Sally says, I cook from scratch. I can scratch open a box with the best of them.
We do laugh a lot. It is easy when Sally laughs. She is going through so much yet laughs all the time.

I am now an official blood donor to TJU. There is a blood shortage out there and I urge everyone to be a donor.

I want to mention that the staff at TJU is fantastic. The nurses Jen, Amy, Dan, Clyde and please forgive me if I fail to mention someone but they are all just incredibly nice caring people. Doctors John Wagner and Neal Flomenberg are some of the best in the business, and funny too. This whole BMT unit has a very good feel about it.

Brittany and I caught the 6:55 and finally made it home at 10:00. She is totally zonked out on the couch with Lenny curled at her feet. Mini-Mom is certainly a keeper.

Big Day Tomorrow. Transplant is Go.

Thursday - July 19

It is done. I saw it. I held it. A day early but who cares. This is the day we have been waiting for. Sally went down for her last radiation treatment at 4:00pm. She wanted us to follow her down to allow Justine to meet us. Justine is the Radiology technician that administered Sally's treatment. She gave us a tour of the torture chamber. That is what they call it but it actually is very clean and modern; not at all what I had pictured. They always say the radiation room is in the bowels of the basement. You can conjure up some pretty ugly visuals with desciptions like that.

After we left we went to the Atrium for some refreshment while Sally was zapped. Brad brought his friend Calvin, whom Sally really likes and Brittany always comes with me.
When we were finished we headed back up to the 14th floor where the BMT unit is located. Sally wasn't back yet so Brittany and I went to the family room and played Sega. Brad and Calvin went exploring the streets of Philly.
At 5:15 I thought I heard someone enter the unit and I went to the nurses station. That is when I saw it. A large plastic bag with red liquid in it. I went to it and looked at the label. Recipient: Sally Poock. Oh my God I thought this is the stuff. The label list the donors NMDP number, Sally's blood type, A+ ,and the donors blood type O+. Sally will now be the same as me, O+. I cannot explain the feeling I had as I held it and looked at it. It was kind of like that feeling when we had our children. The nurses have seen it before. Yep that's it. Sally came in fifteen minutes later pushed in a wheelchair by one of the trans guys. There it is, there it is, IT'S HERE!

We went to the room and waited as the nurse prepped Sally for the procedure. Will the doctor be here I asked. Maybe, the nurse said. It is just like any IV drip, nothing extraordinary. We usually set it up. At exactly 6:00pm on July 19 I watched as the red fluid made its way down the tube and into Sally's body. Am I crazy or wasn't that the most intens thing I have witnessed. Does anybody realize what had to happen to get that marrow to her. It happens all of the time but I felt like finding this woman that was the donor and squeezing her really hard. Probably laying some where with really sore hips right now though.

At 9:00pm, three hours later it was finished. Brad went to the nurses station to tell them it was finished. When she came in she flushed saline solution into the bag to get, as the nurse said, every last drop. We left to let her rest.

We caught the 9:55 train at Market East. Panhandled twice and sat behind some drunks on the train. Philly can be such a lovely place. Don't make eye contact with anybody and keep walking. We arrived back in Nazareth at 12:30.

Sleep well tonight baby, tomorrow is the first day of the rest of your life.

Monday - July 23

I cannot update every day so bear with me. Today is day four post transplant.

On Friday everything was going ok according to the doc. They said the actual transplant would be very anti-climatic. It was. Boredom followed by more boredom waiting for the graft to set.

Another friend, Joan Stringer and her son Chris from Dayton, Ohio, came into Philly to visit and help out. I can't say enough about people like her and Moe that would change their summer plans to come here and support my family.

Sally was receiving the experimental drug they call CD-4 peptide. This is supposed to control the expected GVH. GVH is graft versus host. This is the nasty little condition where the new immune system (graft) doesn't recognize Sally's body (host) and wreaks havoc amongst her organs and skin.

On Saturday I visited the hospital alone. Mini-Mom and Joan stayed home to catch up on laundry and other things. They also went to the movies. Speaking of movies, I took my video camera with me to capture Sally saying silly things, like, "he's a good boy" and "Mommy loves him" for Lenny. Lenny is our part Doberman, part 5 yr. old child. He is totally confused and we thought the video would help allay his fears. We walked up and down the corridor of the BMT unit and sat in the family room. We shared a left over piece of apple pie and ice cream in the family kitchen. The dieticians leave ice cream and pop (that's soda to you easterners) in the fridge. (refrigerator) Sally says food doesn't taste the same and she is not eating much at all.

On Sunday we all went except for Brad. He stayed home to mow the grass!! Imagine that. Ah, he's a good kid. It is amazing how a traumatic event helps to instill maturity and tighten the family bonds and sense of duty. Speaking of maturity, I must now answer to Mini-Mom! Mini-Mom will someday make an excellent marine corp. drill sergeant.
Just kidding. She will make an excellent Mother some day.

I called Sally last night after we returned home and she said they were feeding her intra-venously. She cannot eat and she must receive nourishment through her chest port. That Dr. Wagner is a funny one. He told Sally that the nourishment was going through the tube into her belly. She told me she was starting to feel full. Boy did she feel silly when I reminded her that the chest port delivers straight into her veins. Yes! I love a doctor with a sense of humor!

Today Brad and I are going to visit her and pick up some things for her. When I spoke to her this morning she said they still feeding her through the tube. I said, "you must really be full after eating all night". Ooohhh

Thursday - July 26

MUCOSITIS

Definition

Mucositis is an inflammation and ulceration of the lining of the mouth, throat or gastrointestinal tract most commonly associated with chemotherapy or radiotherapy for cancer.

It isn't bad enough that someone like Sally is already suffering from all of the after effects of chemo and radiation, but now this monster is taking over as master of pain and suffering. She is forced to constantly gargle with two types of mouthwash that is to soothe the pain in her mouth. Her lips are dried and bleeding. She has requested and received the ability to self administer pain medicine with the push of a button. She is hooked up to an IV tree that has two infusion pumps that administer constantly cyclosporine, methotrexate, anti-biotics, nourishment, platelets, saline solution and whatever else is necessary to maintain survival.

I am to be thankful for this modern method of treatment as she wouldn't survive without it. I am not to feel guilty as I leave her alone in the hospital and go home pain free to a house that desperately needs her return.

Sally lost her hair wednesday. She requested that it be shaved because her scalp hurts. Danny, her nurse on duty, acted as barber. It is better to remove it all at once rather than lose it in clumps to lay on your pillow when you wake up or notice in the drain after you have showered.

Today is one week post transplant. This journey is far from over. We are told there is worse to come.

Remember this, master of evil and darkness; Whatever suffering you inflict will never overcome or demean the soul and spirit of a truly beautiful person.
Nothing is more beautiful than someone who can smile and laugh through blistered lips, isolation and loss of dignity.

Monday July 30

Day 11 post transplant. It seems as though the nasty mucositis problem might be abating. Not gone, but I can tell by how she speaks that some of the swelling has gone down in her mouth. They had to change her pain medicine to hydromorphone aka dialudid aka hospital heroin. I told you that pain was bad. She is allowed to request on demand every six minutes a shot of this powerful narcotic directly into her chest port. She has a button that activates a syringe pump. Just think, there are junkies outside the hospital willing to trade places.

On Saturday Brad went with me to the hospital. They were very busy that day. There are now 9 patients in the unit. I have met some of the patients and their families. They all have different stories. Kathy across the hall is a 36 yr. lady that has CLL. Next to her is a 20 yr. Old male that has AML and Epstein-Barr Lymphoma. The Mother I spoke to today and the daughter of the lady all express the feeling we have gone through. Out of the clear blue with no warning you receive the news that your mother, father, wife, husband, brother or sister have a disease that is usually fatal. Next to Sally is Mr. Johnson from New Jersey. His son told me he his Father is very athletic, played golf, worked on the golf course and at 76 was very active. He had a heart procedure performed and they discovered he has AML. Get the heck outta here was the reaction. No way. Way.
Saturday he was lying in bed with the added problem of Angina and a nitro-glycerin IV drip.

Sunday we took two of Brads friends along to visit Sally. Calvin the 7 foot skinny as a rail 15 yr. Old with size 13 peds and Brigid.(not Bridget) I do not know Brigid well enough to comment as this was the first time I met her. I will say that as a trio she would account for most of the intelligence and good looks. After all Brad sports a mohawk and Calvin rolls up one pant leg and never ties his size 13 sneakers. They all like the same music and originally had planned to spectate a punk concert in Philly with such renowned groups as Leftover Crack, Ecumenics, No Cash and Unleash the Bastards. To each his own. Plans were changed for reasons I wont go into.

On Monday Brittany and Caralyn Leslie went on the train trek with me. We drive 45 miles to Colmar on rte. 309 and ride the train for one hour into East Market station. Takes 2 hrs. to make the trip but beats driving in that east coast traffic. Sally takes walks on the unit floor down to the family room. She looks really cute in her blue ball cap pushing her Cadillac and doing the shuffle. Her Cadillac is the IV tree with all of the bags hanging from it. Sometime there are as much as 5 different medicines and liquids being infused into her.
She hasnt eaten real food in a week and a half. To nourish her they feed her from what Sally calls her feedbag. Remember, this is the one that the doc told Sally went into her stomach.
I was very proud of her Saturday when Laurie, Dr. Wagners nurse practitioner, told me that Sally was her star. No problems from Sally, she does everything we ask and doesnt complain much. The other nurses think she is a real character.
You go girl, were gonna kick this MDS with an attitude.

Wednesday August 1

Touched by an Angel

Wednesday marked fifteen years of marriage. We received a very special gift. The gift we received was not planned as an anniversary gift. The giver does not know us or that it was our anniversary. The doctor that passed the gift to us did not know either. The timing and content were perfect.

The gift we received was a letter from Sallys donor. The letter handwritten anonymously on very beautiful stationary was on the stand next to Sallys hospital bed. When I walked in Wednesday morning, she was in bed and asked me to read it. I am sorry, but I choked when I read the letter. The letter started, My new friend,. It went on to explain her reasons for being a donor and how she wondered if the person receiving her bone marrow had children as she does. She explained how the discomfort was minor compared to what the receiver of the marrow was going through.
She ended it........Being allowed to donate has already enriched my life, and I am grateful. Best wishes in your recovery. I will think of you daily and hope that you are doing well.
Love,
Your new friend for life.

It made me think how the first donor had backed out at the last moment. This lady, this angel, was meant to be Sallys donor. We are not allowed to know the identity of the donor or is the donor allowed to know the recipients identity until one year after the transplant. Somewhere out there is Sallys angel. A person that was grateful to be of help to someone she didnt even know.

Tuesday August 7

Day 19 post transplant. Looking for those counts. Cell counts should be increasing soon.
Mucositis is healing. The problem is the healing. The pain is unbearable. I do not want to describe what the mouth goes through. If you want to see for yourself, keyword mucositis into a search engine. Enough said.

The past six days have been days of waiting. Days of taking walks in the hallways and looking at the view. I took Sally our good pair of binoculars and we watch really exciting things like the reroofing of a building and places pigeons call home. From the rooftop view and not the street view, pigeons have a different world. They just go to the street for food. On the top of buildings it is pigeon paradise. I did see a guy on a second floor landing smoking what appeared to be pot. My suspicions were raised because he was constantly lighting it every time he took a hit. I wouldnt know as Ive never done that.

On Monday I took Sally, Brad, Catie Leslie and Brian (one of Brads friends) to visit.
Nice visit and of course I get a taste of different types of music on the trip in the car. Some music ok, some absolutely horrible.

On Tuesday I took pastor Orem from our church to visit Sally. No punk music on that trip! Praise God. Pastor Orem is very down to earth and we talked about a variety of topics. He likes beer (in moderation of course) and I learned how he decides what the sermon will be every Sunday. We had a great visit with Sally. She really likes him. Before we left he said a prayer with us. Sally had a bad day today because of the pain she is in. But I am sure his visit was very timely.

Yesterday I saw the family of the lady across the hallway gathered in the family room and the hallway crying and supporting each other. She had a matched unrelated transplant for AML and she is having problems. She was unconscious and on a breathing machine. Last week her husband was eating lunch in her room with her and she was walking around. I prayed for that woman like she was my own.

Even though Sally is going through much pain she still continues to joke with everyone and has an awesome attitude. She wants a glass of ice cold water more than anything in the world.

I saw this on a plaque outside the chapel and I really like it.

Psalm 27
The Lord is my light and salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid?

Wednesday August 15

Day 26 post transplant. Sorry it took so long to post but there is not much time.
The last week have brought many changes in condition. The mucositis is healing rather well. There are still effects but she was able to start drinking again. Before she could not drink even water. The other day she had some Hawaiian Punch. Part of the healing is also expelling from her mouth and throat pieces of whatever. I wont go into that too much because it is not pleasant and I dont want to embarrass her.

The important news though is the WBC count is up to 6.1 as of Tuesday. It started its climb last Thursday at 1.0, Friday 1.2, Saturday 2.5, Monday 3.2, Tuesday 6.1.
This is extremely important. WBC are the white blood cells that fight infection. We are waiting for the platelet count to come in next. She was not responding to platelet transfusions because they gave her so many random donor transfusions. Her body was rejecting them because she built up antigens to them and was destroying them. The next step was to ask the Red Cross for HLA matched platelets. These did not take hold either.
As of yesterday they were concerned because low platelet count does not allow them to perform some of the tests needed to determine problems she is having with lungs and liver.

Her lungs are showing signs of infection in the lower right rear lobe. They take the shotgun approach with anti-biotics and hope they hit the infection. They need to do a broncoscopy so they can take a look see and a biopsy of the tissue. They would also like to do an endoscopy on the liver. The platelet count is too low and they cant risk internal bleeding. The platelets of course are the cells that stop the bleeding if you are cut and stop any internal hemorrhaging. Sally has petechaie on her feet and legs from low platelet count. This will go away as platelets increase. The minute capillaries in your skin need platelets just to keep the leaks plugged. Lose all of your platelets and you bleed to death internally. Not pretty but this is serious stuff.

Now the good news. I called the hospital this morning and her platelets have done a climb that the nurse called incredible. Yesterday morning her platelets were at 11,000, which is extremely low. Last night they jumped to 55,000 and this morning were at 48,000. This is without transfusion! Sounds like she is coming around the bend.

We just have to take this one-day at a time and slay the dragons one by one. Although she is showings signs of engraftment she has other issues. Right now she is having fitful sleep and sounds like she just ran the 100-yard dash twice. They have nasal prompts in her nose that feed her 6 liters of oxygen a minute. Her O2 saturation is right around 92.
The normal range for an adult is 98. For smokers it is 94. Ha ha thought I would throw that in there as Sally and I are permanently smoke free in house and life. I have asthma and mine is 98. Hey Bob and Betty throw those things out!

I just gotta say I appreciate everyones cards, thought and prayers. The power of prayer is awesome. I am wearing the kneeling pad out at the chapel. Sally is probably the bravest person Ill ever meet. No whining, no tears. Just courage. Wow!

Be strong and of good courage, fear not, nor be afraid for them: for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee.

Deuteronomy 31:6

Saturday August 18

Day 30 post transplant. What a week. But dont I feel that way about every week? Wednesday we hit bottom. When I last updated I mentioned she had the nasal prompts. I was updating from the house prior to going in to the hospital. I mentioned she sounded like she ran the 100 yard dash twice. I called her after the update and it sounded like the 100 yard dash twice, uphill both ways with no shoes in the wintertime. Scared the you know what out of me.

The doctors were a decision away from putting Sally on a ventilator. She had severe respiratory distress and was gasping for air. They were not certain what it was. X-rays showed a small spot on the right rear lower of her lung. They also felt it could be inflammation from the radiation and chemo. Which way do we go was the question. If we administer steroids for inflammation and not attack it as pneumonia we run the risk of spreading the infection. We cannot go in and due an endoscopy of the lungs because of low platelet count. If we do not address it with steroids her breathing might not improve enough to keep her off the ventilator. Finally they decided to give her steroids. One hour after this her breathing eased and it was obviously the right choice. But it got worse before it got better. Doesnt it always?

Let me put this week in perspective. Sunday night my lifelong friends from my school days, Moe and Kathy from Dayton, Ohio drove out with their daughter Kelsey. This is a ten hour 535 mile drive. Could have gone on a real vacation but they drove out to see us.
We get up Monday morning to catch the 10:40 into Philly. We catch the train at Colmar and are held up in Lansdale. Kathy looks at me and asks, what is the holdup? I, like Im some kind of train pro, reply, "oh you know they have to keep a schedule and they are waiting for other trains to pass on the tracks." Five minutes later the conductor comes out and says, "in case you are all wondering why we are waiting. There was a gas leak down the track and all trains have been ordered to stop." Oh well, after a bus shuttle to the next station we finally made it into the hospital at 1:30. Sally was walking around feeling ok and actually saw us out the door. Tuesday we decided to drive in and that is when we received the news about infection possibilities. On Wednesday we drove in again because I wanted no delays and I was panicky about how she sounded on the phone.
We were about two blocks from the hospital when Moes Ford Taurus started making funny transmission noises. We stayed at the hospital all day and Moe and Kathy decided to chance driving the car home. John Leslie was on standby just in case. They made it.
I stayed at the hospital. The next day Moe was to take the car to a local garage.

On Thursday morning we waited for the doctor to make his rounds. This was the day Dr. Neal Flomenberg made his rounds. He is the head doc of the BMT unit. He is the HMFIC. You have to call me to find out what that means or I will privately e-mail it to you. He came in and assessed Sallys situation as well as the other eight people on that unit. I could never forget there are eight other families out there as scared as I am. By the way the lady down the hall is off the ventilator and sitting up. Again, they were not sure what caused the problems but all kinds of doctors came by and visited. Radiation, pulmonary, transplant, resident doctors. Doc Flomenberg gave me a job. He said I must do something. He gave me a spirometer and told me he it was my responsibility to make sure Sally exercised her lungs every hour. The spirometer is a plastic tube with a little ball in it and Sally had to breathe in and hold that ball up ten times. Was not an easy job for her. You can just call me "Puff Daddy Poock". I decided to stay Thursday night also.
That was a rough night.

Now back to Moes car. Transmission needs rebuilt at a cost of $1536. They need to get back to Dayton because Kelsey had plans for Friday. No problem, no choice, take old reliable. My 1990 Buick Skylark. Actually, it is Sallys but she makes me drive it while she drove the new car. They made it home by 4:30am Friday morning.

I say Thursday night was rough because Sally was so exhausted. She had the facemask with the straps that irritated her bald little nubby head. She would pull it off and her o2 levels would go down setting off the alarms. They had her hooked up to a monitor and even had a television camera on her. Whenever o2 levels would go down the alarms would go off and the nurses station would yell through the microphone, "Mrs. Poock, Mr. Poock get that mask back on!" After a while I didnt even hear the alarms. The nurse told me next morning he couldnt wake either of us and would have to come in and put it back on her. Sally jabbered the whole night in her sleep. She was talking to everyone. Of course she doesnt remember the conversations but it was comical in a way to here her hold conversations while she dozed. Friday morning she was so tired she fell into a deep sleep. That is when things started to look up. O2 levels started rising. Platelet counts started holding without transfusion. I had to leave at noon and when I called her she was back to the nasal prompts. She rode the storm out well.

This Saturday morning I called the nurses station and the news was excellent. WBC count is 13.9 with 67% neutrophils. Neutrophils are the little phils that go around your bod fighting infections. HGB was at 10.3. That is at its highest. HGB is red blood that carries around your o2. Platelet count was 62,00 three days without transfusion. She ordered broth for lunch. This would be the first sustenance taken orally in three weeks.

I just wanted to say again, thanks everyone for your messages of support. Dean and Sue in Dallas we love you dearly. Al and Fran, you are really special in our books. Corinna that ice cream will taste exceedingly sweet. Linda you know how we feel about the power of prayer. Moe, Kathy and Kelsey you sacrificed your car and vacation to be here with us. Pamela, that positive energy of yours never fails. Bob and Betty Oday I am so glad Bob quit smoking and of course we care. Caring only works when it goes both ways. Kathy H. thinks for your prayers and American Indian support.
Father Bob that congregation in Bremen works more wonders. Rich Kimmel I am glad you are watching progress. Ginnie and Alex in Atlanta. Sally says mucho gracias for the Spanish lessons. Joan and Chris thanks for coming out, we love you too. Donna Shumaker, Loretta Maille, Erin Meyers in Medina, Ohio. You guys were the best neighbors. Anyone else that sent messages we are very grateful. Sally has read every one.

This isnt over, I am just being thankful we have so many fine friends and family and I wanted you to know without your support we wouldnt be where we are at.

Sally is my hero.
God is good.

Monday August 20

Day 32 post transplant

Congrats to those that caught it. It would appear I dont even know what month it is but it is fixed. Yes, it is August not July and I have a birthday coming soon.

Heres what I want. I want Sally to bake my cake. That depends on what she is allowed to do. I would gladly bake it. How about if she just eats a piece of it with me here and not in Philadelphia. They say she could possibly come home this week. Can you believe that! Last week she was lying in bed asking the doctor if she was going to die. She told me that today. I knew it was critical. I spent two and a half days at her bedside and she never told me she asked the doctor that question.

That doctor came into the family kitchen today. I took Sally some Chicken and noodles and a little bit of mashed potatoes. Some bland starchy food and a bit of protein. We spoke about last week and she concurred how critical it was. The doctor said this business was an art and not exact science. She was thankful she made the right decisions.
I told her how thankful we were and gave her a big hug.

I remember last week that I read a book by Billy Graham entitled Angels. He talks about angels being available to protect and deliver us. I asked God last Wednesday to send Angels to the 14th floor and surround Sallys bed. I also asked them to stand watch over that entire floor. There are many instances in the book that Mr. Graham tells of when angels assist in time of need. Psalm 91:11 says For he shall give his angels charge over thee, to keep in all thy ways.

Now they say less than a week later that Sally might be able to come home this week. There is much to learn prior to that. What to do, what to eat etc. There will also be a nurse coming to administer some of the medicine that requires transfusion. She will keep the chest port for some time yet.

You think maybe some of those angels could hang out here for a while?

Thursday August 23


Day 35 post transplant

What great news. First Sally called me and said to come and get her Friday. I was already preparing for her return. I was cleaning carpets, kitchen floor, and bathroom. I went crazy at the store and bought all types of cleaners and disinfectants. Brittany was getting nauseated from the smell of pine-sol and chlorine. This was a three-day project. Not that the house was dirty its just that I wanted it to be extremely clean. If you are like me you also find that one project leads to another. A floor leads to a wall leads to another appliance etc. Work your fingers to the bone and what do you get? Bony fingers! Thats a Sally original. Needless to say you could perform surgery anywhere in this house, except Brads room. Ooohhhh

The second great news came today. Sally called and I could hear a break in her voice. I want you to speak to someone, she said. Dr. Elizabeth Cartwright came on the line and told me she had Sallys bone marrow biopsy results. This test was to validate engraftment of the donor marrow. A bone marrow biopsy is where they take an aspiration needle and extract bone marrow from the iliac crest of your pelvis. The Iliac crest is the edge of the pelvis. The pelvis bone is flat and has and edge. Actually there is one on each hip. The pelvis is rich in marrow and provides the greatest source. Your sternum is also another source but you dont want them to go there. Just ask Sally about that. They then take out several vials of the marrow, which is rich in stem cells. They were initially very pleased with the look of the marrow, as it was also full of healthy spicules. I am not sure what they are, but doctors like to see them. They look like little white pieces floating in the blood. It took two days for the results of the testing and this is what she reported to me. All marrow extracted was of donor origin and there was no sign of residual diseased marrow. The donors marrow had completely engrafted.

Does this mean she is cured? This is the absolute best result you could expect from a BMT. We do not know what caused the MDS in the first place. MDS is basically early leukemia. It is also known as smoldering leukemia. Myelodysplastic simply means in Greek, Myelo-blood dysplastic-abnormal. There are different stages of MDS and Sally was RAEB. RAEB means refractory anemia excess blasts. Excess blasts are the immature cells that normally occur in your marrow but in leukemia they can and will go into your blood stream still in the immature state and basically useless. Sally was at 18% blasts prior to the transplant. 20-30%is considered acute myelgeneous leukemia or AML.
If for any reason there is one leukemic cell floating around that did not get destroyed by TBI or chemo, then it is possible to relapse. It is possible but not probable. There is also the ever-constant threat of GVH. Graft versus host disease can become either chronic or acute. So far so good. They have controlled any outbreaks of GVH and we will keep constant vigil. I am to inspect her feet and hands daily for any sign of rash. If a temperature or diarrhea occurs than we must get to the hospital immediately. GVH occurs because the new immune system (graft) will not recognize the body (host) and will proceed to destroy it as though it were foreign matter. Controllable but can be very devastating.

The most important thing right now is her return home. She is extremely apprehensive about the return and this is quite normal for patients that were under critical care. Gone is the nurses call button that provided the security of instantaneous response to your every discomfort and worry. Also gone are the completely controlled atmosphere and the guaranteed sterile environment of the BMT unit. Are hospitals basically sterile? No, but the BMT unit is very clean and controlled. When you walked through that door the air was always fresh and brisk. If you ate one of those York peppermint patties the effect would be as though one was bobsledding down the course at the Olympics.watchin too much television.

We are ready. Lenny, Sallys Doberman is ready. We will have a nurse come to the house once a day for awhile to administer some type of med through her chest port. The Rite-Aid in Nazareth has ten prescriptions that will be waiting when we return. This is the moment we have been waiting for.

One week ago was one of the toughest nights ever and Sallys future was unknown. One week later I will be going to bed in anticipation of tomorrow. Tomorrow I will leave very early to get some directions from the docs at the hospital on home care. I will drive very carefully home with my precious cargo. The angels will be waiting.

Sunday August 26

Day 38 post transplant

She is home. No more every day train rides to Philly. No more freezer food. No more late night good night phone calls. No more mucositis. No more forgetting what day it is.
No more missing her and wishing she was here.
Hello pills x 10. Hello training for infusion. Hello wonderful church ladies delivering home cooked meals to the house. Hello honey, you are home and life is good.

Got up early to get to the hospital for obvious reasons Friday. Waited until three thirty for release. There were doctors rounds and home care direction to wait for. There were last minute tests and one last infusion before she could leave. The trip home made it easy to forget that first lonely one when I first took her to the hospital. I just kept looking at her and smiling. First stop, the pharmacy. Way to go Rite-Aid, every thing was waiting and perfect. Way not to go NPA, I have to get exception approval because you wouldnt approve the most important drug she needed, the-anti rejection medicine. Way to go Rite Aid pharmacist that said Ill give you enough to get you through four days and approval for the drug no charge. Home by seven.

What a sight when we pulled into the driveway. Thelma had given Brittany a large roll of yellow ribbon. She had ribbon everywhere, on the mailbox, door handles to the garage, basketball pole. In the house she had put it on all of the lamps and door handles. Bradley was also there and it was a perfect reception for Mom as he carried in all of her things.

On Saturday we got up and started the pill procedure. Some pills once, some twice, some three times for two days and then one time for three days. You cannot screw this up. Made a call to Apria, the home care people, that do the fungicide infusions. Good thing. You see, one of those home angels told me to make that call. There was a miscommunication with the hospital. They didnt think we would need them until Sunday. They made a special trip from Lancaster to deliver the pump and the meds. The nurse arrived at six oclock. Great person. These RNs dont mess around. She knew exactly what to do and how to do it. Trust me there isnt just a pump and medicines. There are all types of syringes, tubes, clips, dressings etc. Sally still has her Hickman catheter in her chest and it needs redressing. No medicine ever has to be needle injected with one of these. The nurse has been a chemo nurse for twenty years and people like that really make you feel comfortable with the care they provide. She is training me to be the infuser. Get your mind out of the gutter. After you infuse the medicine then you have to flush out the lumens with saline solution and an anticoagulant called Heparin. .

So far so good as of Sunday. We must take precaution to prevent infection. No crowds. Be careful of certain foods like deli meats that carry all kind of bacteria. Dr. Flomenberg said the safest food was a McDonald French fry. Nothing can survive the deep fry cooker. I went to church to let them know how Sally was doing. What a great group of people. We have only been members since April and they sent cards to her, made phone calls, the pastor visited. The church ladies are bringing dinner all week. You dont say no to church ladies. They have a mission and it is good. They also feed the homeless in Easton along with several other churches. I am also happy because they want me to be the church Webmaster. The church has a website and the previous webmaster is off to college.

Exercise will be important. It is amazing what forty days of hospital room will do to a persons muscles. Those beautiful shapely swimmer legs are what Sally now calls chicken sticks. Sally was a Sea Sprite for ten years and has many trophies and medals to show for it. She did the backstroke. I like the breaststroke.

Off to Philly again Wednesday already for weekly follow-up. Keep you informed of any changes.

God bless TJU hospital, all of the doctors and nurses. God bless all of the people that sent cards, called and visited. God bless all of the patients and their families. God bless all of my coworkers and friends. God bless my AA-MDS and BMT list mates. God bless our church and the church ladies and God bless people with a sense of humor.

Day 77 post transplant

I know it has been awhile since I have posted. I guess I was just to tied up in getting everything back to normal here and no news was good news.

I had to put Sally back in the hospital on Monday 10/1. It appears that her graft might be rejecting. They are trying ATG or horse serum therapy. Sounds strange doesnt it?
Horses are injected with human leukocytes. The horse develops antibodies to these foreign invaders. Doctors withdraw the serum from the horse, purify and pasteurize and inject into patient. The antibodies are extremely effective in destroying T-cells. It appears that Sallys own T-cells survived and are trying to eliminate the donor cells. Below is a current evaluation.

Friday 10/5/01
I have been going in everyday. Today Brittany and I will go.

Days of uncertainty ahead.

Although she will be possibly released soon it is only because the ATG therapy is over. There were four administered doses of the serum. The ATG destroys or "chews up" cells of the host. Platelet counts plummet as well a lymphocyte counts. The purpose of the serum was to destroy her own genetically identified T-cells. She had no T-cells identified as donor. Her chimerism was 70/30. Chimerism is the genetic makeup of the bone marrow cells. 70% were donors and 30% were Sally's. The 30% were mostly T-cells. After the ATG therapy this could change the chimerism to 90/10. That is speculative. They will not do another bone marrow biopsy to determine chimerism for two weeks.
That is part of the uncertainty. Did the ATG effectively put in check her own T-cells?
The ATG is to allow her donor cells to make a come back or to allow the donor army, as the doctor analogized it, to build up its resources and allow donor T-cells time to develop.

More uncertainty.

The second phase of this attack on her T-cells is DLI. DLI stand for Donor Leukocyte Infusion. Since Sally received a matched unrelated donor, they will have to contact the NMDP. This is the registry that manages the nationwide donor list. There are layers of contact and red tape. This could take up to 6 weeks. In the meantime Sally will be monitored to ensure T-cell counts are not triggering relapse to graft rejection. Will her donor be willing or able to donate more cells?

Post DLI uncertainty

It appears the reason Sally never suffered from severe case of GVH or graft versus host is because she probably didn't receive a large of amount of donor T-cells with her transplant. The body is a wondrous collection of many biochemical behaviors.
It is my unlearned opinion that the lack of donor T-cells triggered a growth factor for host T-cells. When she receives the DLI will she suffer severe GVH reactions?

The uncertainty of infection

The last risk mentioned here is the one of infection. It remains a risk through the entire period. There are many opportunistic bacterium and virus she could be susceptible to if her neutrophils and T-cell counts are bottomed out. Will she be able to stave off infections?

Although there are many uncertainties listed here. I am extremely confident in the doctors ability to manage the situation. Dr. Neal Flomenberg has the attitude on his BMT unit that we will try any and every option available. I have found in talking to other patients on the Internet that some hospitals will not attempt extraordinary means for survival. This one has and will. I am also extremely confident in Sally's ability to manage her own physical and psychological balance. The two are well connected. Sally is a favorite on that floor and at the hem-onc clinic. She manages to bring smiles when she walks in the room. She has turned into quite an inspiration. She just doesn't realize it.

I will keep you posted.
Rick