Home away from Home

A New Twist on Camping

I've been camped out at LDS hospital room E840 for the last three nights. It's not too bad. They've brought me blankets, slippers, and pillows--10 to be exact. (I am a pillow hound at home.) I sleep on a recliner that lays almost flat like a bed. It's right next to a window sill where I put my water and personal items. There's a little-used bathroom across the hall that makes it seem like I have a private bath, and a blanket warmer. The only problem is my roommate is up about every two hours in the night. At least it is warm and lighted when I have to get up in the night--not like real camping.

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A Few More Cell Everyday

The blood cell counts are starting to increase. They kept going down for over a week. Then they stayed on the bottom for about three day. Ray's had a total of 7 transfusions over the last few days: 4 units of blood and 3 units of platelets. But the last three days have shown little increases. Yippee!

For those of you with inquiring minds, today's labs were HCT 29: norm 41-53, WBC 0.8: norm 3.6-10.6, Platelets 37: norm 150-400, and the all important ANC (absolute nertrophil count) 0.1: norm 1.8-6.8.

His neutrophil count now officially registers on the lab results 0.1 or 100. I asked the doctor if the neutrophils could come from anywhere else but the new bone marrow cells and she said no. So the transplanted stem cells are starting to become blood-cell producing bone marrow cells.

Not All a Bed of Roses

Ray continues to fight nausea, diarrhea, coughing fits, and headaches. His eyelids are bruised and he had a little bleeding in his eyes because of the pressure from coughing and the low platelet count which hinders proper blood clotting. His fever has been under 101 for 24 hrs now so his bright red skin is starting to tone down. That made a new development more obvious. He has a rash over most of his body. They think the most likely reason is acute graft vs host disease and they took a skin biopsy today to get a more definite diagnosis.

Meanwhile yesterday and today they gave him diuretics to decrease his fluids because most of the umpteen meds he is receiving are mixed with a cup or more of fluid. So tonight he is breathing better and the cough has settled down. We're grateful for little improvements.

Tonight's order is for restful, deep sleep.

Home Sweet Home

Tonight, before I went down to the hospital cafeteria for dinner, Ray and I were trying to pick a DVD to watch. I left him with instructions to decide what he would like to see while I left to eat. When I returned Ray said, "I decided to wait until you got home and let you pick the movie."

I took some pictures today of our home away from home. Tomorrow I hope to be able to figure out how to get them from my phone to this blog.

Good night all.

Day 10--We're into double digits!

The Roller Coaster.

Today (Sat, Jan 29) is day 10 post transplant. We continue to be on a roller coaster ride. Temp goes up and down (but it never goes much below 100). Nausea continues with some times being more intense than others. The headaches come and go. And a cough has returned, causing havoc with the nausea and headache. Tonight, once again, he is packed in ice trying to lower his 104.5 degree temp. The consensus is that the flu has returned. Actually, they figure that since he has no immune system the flu never went away. They think the anti-flu med kept it at bay. But since they stopped it 2 days ago the symptoms have become more intense. They do say that graft-verses-host disease can cause some of his symptoms but they're not certain that is actually what is happening. So we'll take the flu medication again and wait and see.

We Have Nuetrophils

Yesterday the doctor said that the morning labs showed 18 neutrophils. Granted the normal number of neutrophils is around 55, but when you're at 0, anything is an improvement. The doctor cautiously said that could be a sign of some bone marrow recovery. When we showed her the stuffed neutrophil that our son, Chad, had sent us she said, "I was wrong. He has 19 neutrophils."

Today the doctor said that he had a 0.3 WBC count (normal is 3.6-10, but again we'll take the 0.3 over 0.0 anytime) and that 30% were monocytes (normal being 0-12%). She said that typically the monocytes show up first so the above normal amount could possibly be another sign of the bone marrow recovering. Again this was said with caution.

A Night in the Hospital

It has been about 5 1/2 years since I spent a night in the hospital. Last night I had the opportunity to see how much had changed since my last overnight experience in a hospital (which was actually here at LDSH). Guess what?! Not much has changed. Things finally settled down about midnight, so we were just starting to sleep when the aid came in to take vital signs at 12:30am. Again we we're about asleep and the nurse came in at 2 am to hang a med. So I did some clock watching until about 4:30 when the nurse brought in another med. I think then I might have dozed off and on--in between giving Ray drinks of water and applying ice packs--until they came in at 6:30 to get ready for shift change. The rest of the morning is a blur. But thanks to a loving daughter, I was able to leave this afternoon for 5 hours to shower and take a nap.

Driving home late at night and going to bed alone these last 18 days since Ray has been in the hospital has been a challenge. I could tell he wanted me to stay last night but he didn't put any pressure for on me to stay. It was nice to spend a night together again even under the circumstances. The two times he took my hand during the night and smiled at me more than made up for any amount of lost sleep.

Stay the Course

So we continue on, trying to keep flu symptoms and medication side effects tolerable until the bone marrow starts its major recovery. The doctor said as soon as Ray gets some white blood cells, they will start healing the sores in his alimentary system as well as combat the flu virus, giving him some major relief from these symptoms. A properly functioning human body is amazing.

The care here is wonderful. The caregivers--aides, techs, nurses, and doctors alike--are attentive, knowledgeable, eager to help, great team players, and compassionate. I can feel they are all working to help Ray achieve the best possible outcome with the least amount of discomfort as possible.

The compassion shown by the PA, Ali, today was touching. We met her several weeks ago on one of Ray's chemo hospital stays but we haven't seen her since then. She sat down on Ray's bed today and told him how sorry she was that it has been so rough. She told him to hang in there and promised him things would get better. Then she said firmly to Ray, "So promise me you'll hang in there, okay?" With that kind of a request, he couldn't say no.

So I pass that on to all of you. "Promise me you'll hang in there, okay?"

Our love to you all.

Good or Bad--No In-betweens

Last night about 9:30, Ray got up and after a few minutes he decided he felt well enough to shower. Then he sat in the chair and had some cookies and milk. Trust him to have milk and cookies as soon as he felt like eating.

Right now I'm sitting here in Ray's hospital room listening to one of the 5 IV pumps alarm-a frequent sound since the pump alarms go off whenever an infusion is complete. It's shift change so responding to a call light takes a little longer. I'm counting 7 IVs running right now. It's an art to just figure out what line is going in where.

Ray felt pretty good this morning--even said he did some work on the computer. This afternoon and evening have been a little rough. I guess he's going to be an "all or nothing" type. Either he'll feel good or bad with no in-between.

He proved my theory this evening. He spiked a fever of 104.8. That got the nurses jumping. Soon he was covered in ice bags. The nausea returned. His cough--which had all but disappeared--went out of control and he turned bright red all over. So now, two hours later and thanks to modern medicine, the fever is down to 100.6, the cough has gone, the nausea calmed down, and he has started to relax. Maybe he will get some sleep tonight.

Again, no one can say for sure what is going on. They continue to say this is the rough part of the transplant. At least that means they can't find anything bad going on. They say sometimes patients get fevers when the new cells are en-grafting. That's a good sign. But high fevers are not preferred. Again Ray has given the fever thing his all.

Well, it looks like he finally is getting some sleep. Yea! The other day he told one of the nurses to just put him to sleep and wake him up when it was all over. The nurse said he had heard that before. All in all, Ray's a trooper. His spirits are up most of the time and he's constantly looking for the positive.

We continue to be amazed by the outpouring of love and concern from all. We're grateful for great ward members, good friends, and wonderful families. Our love to you all!

An interesting side light:

Our nurse today said that one of her nursing instructors told them in class a few weeks ago that a lot of the donors have been from Germany. She said she thought there was some kind of government requirement for Germans to join the bone marrow registry. Interesting. Ray already figured, through the little information we received about the donor, that he wasn't from the USA and that he had been in Europe sometime between 1980 and 1996. What if the donor is from Germany and related to Ray? (Ray's grandfather was German and came to America when he was 10) Hmmm............

Third and final post for the day!

Day 8

Today is Ray's second complete day of not eating due to extreme nausea. He's still suffering with headaches. The doctor and the PA say this is the rough time for bone marrow transplant patients. They are careful to not say this is normal, saying everyone is different. They don't like to give any time frames either. I think the phrase I've heard the most over the past 10 months is, "We'll just wait and see what happens." But they are very attentive and concerned about Ray. After listening to how he felt today, they changed some meds to see if that would help alleviate his headaches. They also ordered lab tests to make sure no infections are developing and a CT scan of the brain to make sure there was nothing going on there to contribute to his headaches.

After questioning almost everyone I've seen today, I have concluded that it is not uncommon for BMT patients to experience what Ray is experiencing. The consensus is that patients start feeling better when they start making their own blood cells meaning the new bone marrow engrafts and starts producing cells. The earliest that happens is day 12 but usually the turn around, so to speak, is day 15--still a week away. The nausea can last a couple of days up to several weeks depending on what's causing it. Side effects from the 2nd cheomo Ray recieved have been known to linger for months. Since there are so many variables, they never try to predict what is going to happen with a patient.

So, meanwhile, Ray's counts are dropping. He received platelets yesterday and blood and platelets today. They are giving him nutrition through the IV (TPN--total parenteral nutrition), as well as multiple antibiotics and numerous anti-nausea meds. Ray still tested positive for influenza A so the headaches and nausea could also be due to the flu or to meds or to chemo. Take your pick.

I've been here everyday so far. Ray has often commented that he's glad for the company. He really is isolated. They won't let him leave the room until he tests negative for the flu. He says he likes me to talk to the nurses and help him keep the meds they've given him straight. I did manage to get a few hours in at work this week, but it's hard to concentrate with everything that's happening here. LDSH has become my second home. I have my computer, a book to read, some snacks, and Ray. What else do I need?

My children are my biggest blessings. The physical and emotional support they offer us is amazing. I don't know what I'd do without them.

Thanks to all of you for your prayers, love, and concern. The Lord is watching over us.

I hope to keep you posted on things here.

Love, Chris

Transplant Updates

Overview:

Ray received chemo for seven days to kill off bone marrow, preparatory for his stem cell transplant. As far as we can tell, the chemo problems for those seven days were pretty minimal. He did, however, contract influenza A (the flu) and experienced upper respiratory symptoms, some nausea, and headaches throughout the week. They started him on some anti-flu medication (Tamiflu) and some extra antibiotics. He also had a sore neck from the central line placement which contributed to some headachiness as well.

(See Ray's blog for more info on the transplant schedule and the transplant. raylyoung.com)

Days 1-7

The first few days after transplant he did pretty well even with occasional bouts with nausea. He started to be feverish in the early mornings but was up and about. He was still having occasional headaches which were hard to get under control, and upper respiratory symptoms--stuffy nose, cough, etc. They started him on major anti-rejection drugs, one of which they have been giving to him continuously through the IV 24/7 since day T-1 (Tacrolimus or Prograf).

These last few days the nausea has intensified as well as the headaches. He's had several fevers with last night's registering at 102. They're always concerned about infection since his immune system has been totally annihilated by the chemo and the anti-rejection drugs. It seems like every hour they are bringing in some IV med--anti-biotics, anti-fungals, anti-rejection drugs, anti-emetics (anti-nausea), analgesics (anti-pain), etc. (Just for fun I thought I'd list the meds he's getting regularly. You can skip over this part if you're bored.

Daptomycin, Amphotericin, Acyclovir, Tacrolimus, Methotrexate, Midrol, Murinol,

Compazine, Aloxi, Benadryl, Zygerid, Tamiflu, Ativan, Protonix, Actigall, Primaxin, Caspofungin, Potassium, Magnesium, Benadril)

I guess after receiving all those drugs, who wouldn't be nauseated.

Trying this out

I guess there's going to be a new blogger in town. Since my number one blogger is down for a little while, I thought I try to write a little to keep interested friends and family updated.

I apologize in advance. I'm not a desktop publisher or a computer wiz. So plain and simple is what you get.

Since I am in the medical field (I'm a Registered Nurse to be exact) you will probably get a little different twist on the transplant updates. As I've often told Ray, you can't take the nurse (or mom for that matter) out of me. I think I was born a nurse having a doctor for a father and a doctor's daughter for a mother. The mom part was instilled in me when I started, at age 9, helping out with my little brother, Mark. So there you have it.

Well, we're on an adventure so to speak, and it will be interesting to see where it leads us.

Thanks to so many for your love and concern.

P.S. My title is the nick-name my mom and dad gave me when I was tiny.