The process continues

Each day Randy's immunity count goes down - it drops by half each day so in a few days he won't have any left. This is normal and expected but it's unnerving to live through. Randy's appetite and energy are dropping, too.  But the staff here are wonderful. Last night the night nurse Jahlia was so soft-spoken and efficient that Randy was able to get back to sleep every time she woke him to take his vitals, even when she had to turn on the light to take blood samples. At least she could use the central line instead of having to stick him.

Today Randy's appetite was really low - he skipped most of breakfast and lunch. And then Jeremy, husband of patient Brenda who Randy met while walking laps, went out and brought us back cheeseburgers from Bev's. Excellent - that fixed the appetite!

Randy continues to walk the equivalent of two or three miles every day. He is doing everything the nurses tell him to do and is very appreciative of everyone's efforts on his behalf. Our favorite nurse Brittany seems to appreciate Randy, too!

Saturday

By now they gave him his own dry-erase marker!

Friday

Randy upped his daily walking goal from 15 laps to 20. And promptly did 35 laps.

He is not retaining as much water but still has some. Brittany doesn't want to give him more meds because it's in the same group as the stuff he reacted badly to on 5/22, so he will continue to improve naturally.

He's getting some sleep but I'm not. Even in the hotel I can't seem to sleep without him.

Since his immune levels haven't dropped yet, Brittany said he could walk a bit outside of the ward. So we walked out to the clinic area and up to the 8th floor, where Randy could look out to a slightly different view.

All in all it was an uneventful day, which, when you're in the hospital, is the very best kind of day. May the rest of his days here be just like this one!

Thursday

I did not sleep well Wednesday night on the hospital couch but last night at the hotel I slept like I was drugged! I had a quick turkey sandwich went over to see Randy. He was feeling good so I walked back to the hotel to get the truck because he had a short list of things that would make his stay easier. The valet brought the truck right to the door but there were a lot of vehicles there and I had a ridiculously hard time getting out - eventually I backed out the "in" driveway. Then on to Walmart. Afterwards I went to Sam's club for gas and to pick up 2 trays of snacks for the staff - they are all wonderful!

Today lots of people came to check on Randy but no problems except he is retaining fluids. Well, yes, he had to eat a lot of frozen treats and they had him on an IV all night (to rinse away the medium that the stem cells were in). So today they gave him a bit of something to help counter that and will watch it. 

Brittany added to the bandage over his central venous line. The newer bandage doesn't stay on as well but it's much better for his skin - no more welts - so he will continue with that type.

Patients here should walk as much as they can. To encourage this the nurses set up a board where patients mark their circuits around the wing. Randy continues to be the champion hall-walker.

Since we are going to be here so long, it's great that the hospital has a free laundry room. I did a load today yesterday catch us up. Each machine has to be cleaned after each use, using gloves and sanitizing wipes.

Later in the evening Randy gave the second treat tray to the the night staff, but I was long gone. Since I walk to the hotel, I leave while it's still light outside.

Time to get those stem cells back!

Randy had lots of visitors this morning - occupational therapist, nurses with new meds, new doctor, lunch staff, all the levels of medical personal associated with his care coming in to say hi and ask how he's doing 

When it was time to start the stem cell IV, nurse Brittany asked if we wanted to start with prayer - yes we did! We love Brittany!

She hooked him up and started giving him his stem cells back. His final total of self-donated cells was 3,500,000. Less than what we thought but more than enough. Just like when they were collected, they returned as a soft pink color.

They had divided the cells onto 4 bags before freezing. They need to freeze them to keep them this long, but the cells are only viable for 30 minutes after they thaw. That's not long enough for a big bag to process, so they use 4 smaller bags. At the end of each bag they switch to a clear liquid to flush the line and get every cell possible. At this stage we could see the little cells and clumps of cells as they moved through the IV line.

Afterwards one one the chaplains came by to pray with us - we appreciate this so much.

The day you get a bone marrow transplant is considered your new "birthday".

And the wonderful staff celebrates it with lots of presents and cheers!

Onward to chemo

Monday was Randy's pre-admission check to be sure he hasn't picked up any bugs or infections. Nurse practitioner Valeria said everything looks fine so we are moving forward. Randy will be getting a reduced dose of chemo. 

Tuesday morning before Randy's hospital admission he wanted pancakes for breakfast. So we went to Old country buffet. They aren't the best pancakes but they are pretty good. 

He checked into the hospital at 9:30 and went up to 7th floor where they took him to his room that will be his"home" for 2 weeks. I like that one wall is basically all windows over looking the lake between the buildings. 

Every time someone new comes in (nurse, head nurse, nurse assistant,etc) they ask pretty much the same questions. I hope they are getting his allergies down right!

A doctor came on to talk to us. There are 4 doctors who rotate this care; our doctor is one of them and so is this guy. He seemed knowledgeable and was comforting to talk to. He had a reasonable explanation of why they can inject the stem cells so soon after giving him the chemo, which helped us relax a bit.

Then we had a bit of a wait until they got him in the system, at which point they scheduled his chemo for 2:30. The first step was for Randy to eat ice, popsicles, and ice cream for 15 minutes. Mouth sores and teeth problems are chemo side affects so the idea is to contract the blood vessels in his mouth to limit the amount of chemo absorbed there. Then they hooked him up.  The treatment itself was uneventful, which is normal. Randy had to continue to eat cold things throughout the treatment and for another 30 minutes 

Afterwards he was pale and weary so he rested quietly until dinner. Hospital food seems good enough - he liked his fried chicken. I walked to the hotel to get a turkey sandwich, then came back to the hospital because I wanted to spend his post-chemo night with him.  Thank God it wasn't a bad night. Night nurse Reba came in at 9:30 to give him meds and hook him up to an IV drip. Then we spent a quiet but restlessness night. Randy had to have his vitals checked every 3 hours and the sofa I was on was un-sleepable, but he's not having any side effects yet so that's all that matters.

Mea Culpa

Randy got his CVL put in on Monday. The process didn't hurt much and the result was a neatly covered line.

A couple of days after we got home Randy said it was itching. Encouragingly, I said that was a good sign because it meant the incisions were healing.  We had the same conversation a couple of times as the day went on. That evening when he got ready for bed I got a good look at the thing and oh boy, I was wrong. Instead of healing it was raising angry red welts under the dressing! We called the Bone Marrow Clinic who said Randy must be allergic to the dressing so we should go to our local oncologist asap and get it changed to another type of dressing. Randy may not listen to me next time.

Tuesday - Apheresis Day

This morning Randy took another big step in this process. Apheresis is the process of drawing blood out through one of those ports Randy had installed yesterday and sending it to a special centrifuge that separates it into several parts. The stem cells are collected in a hanging bag and most of the rest is returned to the body via another port. Anticoagulants are added to the returning blood, which can cause loss of calcium so they add calcium with saline fluids.

The blood goes through a path that looks like a circuit board.

Courtney kept checking the color of the stem cell fluid because stem cells "live" in a certain color range so they adjust the centrifuge if needed. In this highly technical world of medine, they check it with a plastic utility flashlight.

At 11 she took a sample from stem cell bag for an estimate count. I'm not sure why they do that because, listening to the collective discussion about how to estimate, it's clear that this is not very reliable. Courtney even warned us that it's not reliable - the value probably lies in identifying very high or  low quantities. The estimate for Randy was 4 million.

Noonish Randy had a ham and cheese slice sandwich, although he wasn't very hungry; probably more about having something to do.

2:10 and the collecting part was over. They stripped the collection line to be sure they saved as much as possible, then sent the bag to be counted. While that was going on they set the machine to backflow to make sure all the extra blood in the line and centrifuge was returned to Randy, then changed the bandage over his incision. By the time they were done with that, the actual counting was done; 4,300,000. Dr Dean confirm that was enough so he does not have to have this process repeated tomorrow!!!

Monday

This morning at the Bone Marrow Check In Lab the tech put in IV to draw blood to check number of stem cells and for later use (has try twice).

2 Shots today as usual. The nurse today is Kamila, not Julie. Julie was good but somehow the shots today didn't hurt as much so Kamilia is our favorite.

Then we walked the tunnel to other building. Unlike the older hospital tunnels I've been in, this one was a nice wide hallway, well lit, with ER phones along the way. Once there Randy checked into Radiology where he got 2 pages of labels to be used - how much blood are they going to take?!

Randy ended up on a hospital bed in a gown top and answering lots of questions.

The procedure is done with Ultrasound and live X-ray to make sure they know where they are working at all times. The line will go in on chest, under the skin, over collarbone and down to heart. This is done with conscious sedation and pain meds.

After about 45 minutes they wheeled him back. He was wide awake and looked great! Then they removed his IV - ouch, there went a lot of hair.

He was wheeled back through the tunnel to the Bone Marrow Clinic for more information about what to watch for and what to do if that line looks displaced (Panic? Cause that seems reasonable to me!)

The cut above it is where the line was inserted and instead of wasting time with stitches, they just glued it shut!

Weekend

Saturday and Sunday Randy was at the hospital at 8 am again for more injections. He handled it very well and gets along with the tech, who tried to help us with ideas of things to do in Gainesville.

To fill the rest of the days we went to Hailey Farmers Market (a lovely little market in a lovely town), the wonderful Florida museum of Natural History, and the Waldo Flea Market (a true flea market).

Over the weekend we ate breakfast at the hotel, salad at Newk's Eatery, pizza from Domino's, lunch at Dairy Queen, and gyros and salad from Trader Joe's. 

Again, all of this is just filling time. Monday will be a little more "interesting".

06/07/24 Starting the process

At 8:00 this morning we were at Shand's hospital so Randy could start the first of a series of injections designed to make his bones release stem cells. We received a lot of information about the effect of this, mostly about pain. But we can only go forward.

Afterwards we set out to see a some of Gainesville to fill the time and take our minds off this. We went to the Matheson museum, Bass pro, Whole Foods, other stores, and ate at Bolay restaurant. We did fill the time but we never really got distracted.