More Platelets Please!

Adele & I were at IPOP this morning, and after the customary 2 hour wait, found white cell counts coming up but platelet counts dropping again. Left IPOP, back to the apartment and drop all extra items, then off to the Safeway store for supplies. Adele sat in the van with the heater on while I shopped. My brother called twice, as he was at our house in Ephrata picking up supplies for delivery tomorrow.

Then - the hospital called and said they had a good match for platelets and wanted to transfuse Adele again. Checked out with the groceries and dropped her off at the front door of the Weinberg building. She went back to IPOP and got started with the platelets transfusion.

In the mean time, I drove back to the apartment and pulled up front to get the cart and all the groceries back into the apartment. Everything was going well until the door key did not work. Groceries left in the hall and back downstairs to get the electronic key renewed. After 2 trys, the girl had one of the house keeping crew let me into my room. After a 1/2 hour there was a knock on the door with the redone key - which now works.

Now I need to wait the 3 hours before going to pickup Adele at the IPOP after her transfusion is done.

See you all soon? - Rick

Another day - Another count

We go to IPOP in 15 minutes. God is fighting for Adele - she is having a hard time remembering that and keeps looking at all the "what if" scenearios. I pray for much better counts this morning.

To All - Happy New Year - Rick

I feel like 'Count Chocula"

We are going to IPOP everyday and looking to see if the blood counts are rising. The transfusions yesterday got the platlets and red cell counts up, but the white cell count is still very low. Now we are not sure when, or even if, the peresis will be done. Mindey Landau, nurse practitioner extraordinaire, talked with us and mentioned that they might have to get the stem cells in another way if counts do not come up. We will be here more than through Wednesday, possibly into next week now.

The apartment clothes washer and dryer has been running, so clean clothes and sheets and towels are no problem. Safeway has a nice store within 2 miles of the apartment, so that is no problem either. Our stash of frozen suppers will be gone by Wed evening, so we will be doing more than heating up dinners later this week. Of course we do have pork and sauerkraut for New Years Day! Leftovers from when Julie & Eric were at our house. God does provide us with many wonderful things. Now if only He would grow some new skin on the end of my thumb, where I used the apple peeler to peel off that big patch of skin.

Love to all - Rick & Adele

Minor EMail problems

The free John Hopkins network seems to have a block on all Comcast email addresses. I have had every email sent to a comcast adress blocked as not able to be sent. On LCCC board members - I can use their normal LCCC email addresses, but for my brother, there is no other email I know. Thanks for the offer to get things here Jim, I think we are OK for a longer stay. Wahser and dryer in the apartment works great.

Rick

Got her back

Adele is finally finished today with all the transfusions. 2 bags each of platelets and red blood cells. Back to the apartment by 3:05, she had left at 7:15AM so she is tired. Although I should say not as tired as she was this morning, the counts are already up - now to see what tomorrow brings.

Rick

Views from the apartment

As I said we are on the 4th floor of the JH apartment - across the street from the Weinberg Building. The apartment is called the "Hackerman - Patz Patient Family Pavilion". I took these pictures yesterday afternoon.

1st Pic is Weinberg building - top floor (5th) is where the IPOP is located and only shows about 1/2 of the building:


2nd Pic is looking down Orleans St - west toward Route 83 - the building at the right (across from Popeyes) is a new building opening sometime this year and is the Robert & Clarice Smith Research Laboratories & Bendann Outpatient Surgery Center.


Third picture is looking more toward the south and Baltimore downtown:


Rick

Counts lower still

Adele's platelet and red cell counts were low enough that she needed 2 bags of platelets and 2 bags of red blood cells. White counts have to come up themselves, so she gets nothing else for that to come up. I went to the grocery store while she is in the IPOP, that way I know she is well taken care of while I am gone. We both got to IPOP at 7:30AM, and she should be finished about 2PM or so after all the transfusions.

It is looking like we will enjoy the New Year's celebration here in Baltimore and possibly not be home until the weekend. We will know much better tomorrow and Wed, or as soon as the counts start climbing instead of dropping. In the mean time, the apartment is very nice and will make it much easier to be here. We had been prepared to come home Wed afternoon and then back on Friday for registration. Now it looks like we will just already be here and not have to do the drive.

Thanks for all the prayers. See you in 2009 - Rick

Counts Done - And Low

Adele & I walked to the Weinberg Building this morning - all of 1 1/2 blocks. In IPOP at 7:25 AM and had all the diagnostics done. The nurse also changed her gauze dressing and !! found so little blood - we might go to the weekly dressing in a day or so. She also provided some supplies that the home service did not provide or gave us the wrong version of. Semipore dressings and chloraprep cleansing wands.

Adele's white cells and platelet counts are both very low. Need some prayer that they start rising today or a transfusion will be needed. That allows yet another possibility of infection to enter her body and we do not want to have any infections. She is wearing her mask most of the time we are out of the apartment. She will need to walk more and get some exercise. Wow - her not me! wonder of wonders...

The apartment is a bit of heaven for us. We will spend the day reading, walking and some TV watching. Tonight is some soup for supper, I think Elaine made it for us, while last night was chuck roast served over potato rolls. Tomorrow we have chili, made for Julie & Eric, although we never used even 1/2 when they were visiting.

Thanks to all for the prayers - Rick

This is walking back to the apartment - just ahead on the left - directly across Orleans St.

The JH Apartment

Adele & I arrived around 3:30 PM at the JH apartments. They have secure access to the building and garage. Wonderful people at the front desk and hotel style carts to get the luggage to the room. The room we are in is an extended stay apartment, top floor (4th) with tons of windows to look out over Baltimore. Sitting here in the small living area and looking at the downtown skyline, ablaze in lights. I guess during the game tomorrow night, the lights will blaze a bit more.

Room for 4 people here, with the fold out couch. 2 flat screen TVs, 1 here in the sitting area, and 1 in the bedroom. Headboard of the beds, 1 twin and 1 double, is actually the windows. Shades built in, one for privacy and one for darkening. Wow is this great or what, we feel so blessed to be able to have this apartment this week. Stress levels will be much lower for us.

Just across Orleans is the Weinberg Building, where Adele has to report to at 7:30 AM. I think I might just come back and clean around the apartment. Adele is doing the dishes while I blog. More tomorrow.

Rick

Getting ready for Peresis

Here we go - getting packed for the next 4 - 6 days at John Hopkins. I decided the car is too small for everything we plan on bringing and we will use the van instead. With all the food and supplies for the stay at John Hopkins, we need more space than that little trunk. 2 coolers, one for food and one for flushes and injections. 2 suitcases this time, 1 for clothes and 1 for medical supplies and pillows.

Adele will have to go to the IPOP clinic every day until her stem cells are at a peak. When that happens she will have the stem cells taken out of her blood using a big machine that then returns the rest of the blood to her. So every day for the next 4 - 6 or so we will be at the apartment and visiting IPOP for the tests.

More later when we arrive - see ya - Rick

John Hopkins again

We just arrived at John Hopkins again, Friday the 26th. Today we are hoping to get Adele's peresis catheter a stitch or two to help with some of the healing and bleeding issue. Into the garage around 11:30, to Blalock 5th floor around 11:45 and they were waiting for us. The receptionist knew Adele's name as we came to her desk. Only 3 other patients here this AM, so not many people coming in today.

I will add to this post as we find out more with Adele's minor problems. Not even sure if we need to get over to IPOP or not..

The doctor came in about 12:30 and "glued" her shut then dressed her catheter. Said that would take care of everything. Same doctor that did the catheter inn the first place. We arrived back home by 3 PM. Now on to planning for the next week at John Hopkins.

Rick

Christmas visit to John Hopkins

Adele & I drove to Baltimore today - concern by the home infusion supply folks about her catheter still leaking blood. Got there around 9:30 AM for the check, waited until 11:30 or so to get the OK to go back home. We will most likely need to go back tomorrow, the 26th, for a stitch or two.

Turns out her catheter is not secured properly to the incision area and will maybe need a stitch to secure it fast. Apparently it has been moving too much and the wound is not healing as it should. No doctors available on Christmas Day to do the job, so maybe another trip tomorrow.

We are also going back to JH on Saturday afternoon to check into their new apartments at Orleans St and Broadway. Just across Orleans from the Weinburg Building, which is where we go 99% of the time. Got an extended stay apartment, which is the larger apartment, so we could have bigger parties in the evenings. Really, I told them, no matter which type of apartment is available, we would take either - no matter the extra $27 / day for the larger one. So that is what we got. Staying from Saturday through maybe the 30th or 31st or the 1st?? Not sure, just need the numbers on the stem cells to be right.

If you go to maps.google.com and look up Orleans St & N Broadway, Baltimore, MD you can see where we are. Go to the street view, and look at the corner that is under construction, the red brick building is the apartment. If you line up the window so you can see the pedistrian crossover bridge in the middle of the screen. The Weinburg Building is on the left side of the picture and the apartments are on the right side. Both buildings have a distinctive peak on the roof, Weinburg has many more while the apartments have a peak on the corner only.

Merry Christmas to everyone - Rick & Adele

Time for Joy

Dec 24th and Christmas is coming every day to the Stauffer household! Yesterday we celebrated Christmas with Julie and Eric, ate too much pork & sauerkraut, and received many calls and visits (no further than the doorway). Neighbors and friends bringing gifts, home nursing people picking up and dropping off supplies and many phone calls. What a beautiful day! Many tears upon Julie & Eric leaving last night, but we had a great visit and viewed all of the latest Ruby shots on our new digital frame.

Today, more requests from us to home nursing for supplies that I thought would be delivered yesterday. They did deliver 1 part of the order, I just never looked at it until last night. Adele's peresis catheter is still weeping blood and needs to be changed every day. This morning she had blood on her PJs and we decided that the entrance wound, which is just super glued shut, is now bleeding a drop or so, so we covered it with a bandage.

Today I go to Tom & Shannon's for dinner and a church service where Kaelyn is singing. It is icy now, but the weather guys say 47 degrees later - so we should get mere rain for the rest of the day. Mom & Dad are scheduled to go with me - picking them up at 12:30 - to go to the big Christmas Party celebrating Jesus' Birth. What a glorious time of the year.

Merry Christmas to all - Keep Jesus in your heart
and You will find much Joy in this season.

Love ya all - Rick & Adele

Leaving Baltimore soon

Adele & I have been in Baltimore since Sat afternoon. Sunday was a 10-11 hour chemo treatment. Again the Lord provided little to no side effects for Adele. She has taken chemo better than many others, a friend we met here in JH was very ill with the same treatment before she went home yesterday.

Today she has a few tests to do, the blood was already drawn, now we wait for 2 hours or so to see if she needs to take home any additional medicine. We also (I really) have to give her the first Neuprogin (?sp?) growth hormone shot. First of maybe 10 or so. These will need to be given while we are home and when we are here during the 27th - 31st waiting for the stem cell peak and peresis (or taking of the stem cells). They say the machine to do that looks like a big old dialysis machine.

For now we wait and see what they want next. Then back to Ephrata and the store this afternoon.

We have also received another call about a JH apartment that we might be able to get, instead of using the Sheraton. Pray for this - it would be a very good think since the apartments are just across the street and we could easily save $60 or more a day if there.

See ya all - Rick

PS - We are very limited to what visitors we will be able to see while at home - so Do not drop in unannounced, we might not be able to open the door.

Ready and waiting

Here we are at JH - we arrived in IPOP at 7:10 - always early or on time. Adele and I stayed at Debbie C's again last night. Called her from the road to let her know when we would get there and to think of where she wanted to eat - as we wanted to take her to dinner. Duh - we should know Debbie by now - she had already made (or was in the process of making) a chicken pie for dinner. Also had the best (fresh from Giant) sourdough bread. Love that girl, she makes this process much easier for us.

Adele has been drinking water in prep for the treatment today, again hydrate to protect the kidneys. Nurses are here, making coffee already and getting ready for the 21 patients coming to IPOP on this Sunday.

More later - Rick

Decisions - Life or Joy

Today was a tear jerker. Adele & I had to come to the realization that we would not not be able to have our grandaughter, or any children, in the house after the 22nd. Adele gets her first big dose of chemo on Sunday the 21st. Shortest day of the year and the treatment takes about 12 hours, mostly because of the need to hydrate, hydrate, hydrate. The chemo drug can hurt the bladder if not hydrated properly.

Rearranged Christmas in favor of getting her to JH on time and in good health, without any chances of infection from others. That means Adele will have no Christmas services, no children visiting, no friends, just Rick & Adele changing dressings and flushing catheters each day.

We are both resigned to make this Bone Marrow Transplant as effective as possible by following all the rules given to us by the doctors of JH. After 2 doctors said they were against having children in the house, we had to come to that decision. There was no other way for us to reconcile having Ruby here. We will need to plan a trip in March or April as soon as the doctors agree she is ready for it. GA and Ruby will be the goal, while Kaelyn and Mason will get to see Nanny much sooner.

I plan on getting to Christmas Eve services in Harrisburg, hopefully with Tom & Shannon, Eric & Julie (and Ruby), and Mom & Dad. It will give us a family time, and I need to take pictures and movies of everything so Adele can share the experience through them.

We do feel God is in this every step of the way. His leading us - has helped us in every decision. He has also provided me with a calm so I can provide all the caregiver services for Adele. Today we pack and return to JH for 2 days, and we are felling good about it all. Thanks to the Lord, and our many friends that are helping us through this.

Love ya all - Rick

Home for 1 1/2 days at last

Got back in Ephrata about 6 PM. Easy trip from Baltimore, seems shorter every time we do it. Although stopping at Cracker Barrel and having a lunch/dinner combination meal with pecan pie, ice cream and cocoa makes it much easier to take.
Unloaded the car, brought everything upstairs and got my 'boot' off. Almost time to rest - but also get the trash out tonight before I forget it. Oh, also transferred email to the desktop again, any items I changed while there, not many - just LCCC stuff.
Happy to be home for the next 2 days and then back to Baltimore and the start of chemo, although you could say it started today with the rituxan. Then we get a Christmas break with family and back on the 27th for a week or more.
Rick

Day 3 @ JH - Coming back on Sunday

Adele (and I) slept well last night. She stayed on her back and tried to not move her right arm too much, but still managed to get a good night sleep.
This morning we changed the dressing again, and I was very happy that there was no major bleeding during the night. Just bloody enough that we thought it should be done. Maybe the IPOP nurse can look at it.
Left Debbie's (the most wonderful host a couple could have) around 9:30 this morning and got here by 10:05 via 895 tunnel and Route 40 (Orleans Street). Garage is full, machine for tickets was jammed, but I dropped Adele off at the elevator and drove around until I found a legal spot.
She is now in doing blood diagnostics, then more blood tests, and finally around 4 - 6 hours of Rituxan drip. More later - Home tonight.
Rick

Wow what a Day!

OK - we came to IPOP after insertion of the catheter and I learned how to change the dressing and flush the catheter. Did ok even with all the blood from the fresh catheter insertion. Blood all the way down to her waist.. Had a snack, since we did not have anything all day. Got out of IPOP about 6PM and to Pizza Hut around 7 or so.
After a great pizza, we went to Debbie's and Adele said something about feeling blood dripping down her side again. At Debbie's we stripped her top and blood was again all down her side. Laid her down on the bed, with a plastic bag under her, and cleaned and redressed the catheter site. A good learning time - I am ok with dry hands and putting on gloves - but slightly damp hands, even large gloves do not go on easily.
Kept her flat on her back for an hour or so and she was much better. Put old sheets under her for the night and we were Ok.
Thank the lord for good training at JH about how to do this...

Day 2 @ John Hopkins

We had a 9AM insertion of a pherisis catheter scheduled, but due to a delay in the insurance authorization, it was 3 pm before they started it. We still need to go to IPOP and get the kit to clean the catheter, and stop by the pharmacy to pick up pain meds and more.

Parking is a hassle, but do able. Have a small spot, had to squeeze out of the car after I dropped her off in the main aisle.

Patience is wearing down, and Adele is doing well otherwise.. Tom (her doctor doing the procedure) just stopped by - 3:20pm - and the catheter is in and positioned at the right place. So once she gets through recovery - we can get on with the rest of the day. Maybe even get some lunch soon.

Rick

Day 1 @ John Hopkins this week

Today we registered downstairs and met with Laura. Went upstairs to IPOP (our home when an out-patient in JH). Diagnostics done, much blood drawn. Then it was my turn. Learn how to change the dressing on the peresis catheter, learn how to flush the catheter and learn how to give the GCSP shots to her. Shots start 12/22 until peresis (when they take out the stem cells) is done around the 31st?

I was a mess by the time we finished, how does she feel? We learned that she will NOT be able to hold or cuddle Ruby when they are here for Christmas. The doctor stopped short of saying she should not be in the house. He said all kids are germ buckets, and a danger to the success of the BMT. But Adele will be lowest around the 26th, so we are going ahead with everything. Just not allowing her outside or in crowds.

Crying and feeling bad for the evening, just such a dissapointment for her. Debbie the workaholic was not home til around 10. Love her for the help she is providing. Like the Sweet n Sour Pork and rice she had prepared for our supper.

Rick

Tomorrow to John Hopkins again

Tues, Wed and Thurs are in JH for more procedures and training for me. This has been a very hard weekend and today is the same. As the date draws closer for Adele, she is reading about everything and rethinking the procedure. I am sure she will be OK once we get there and talk with the Doctor on Tuesday. But until then, now has been tough with much stress.

Tues is blood work, Doctor, consent forms and training for the caregiver - yours truly.
Wednesday is implantation of her second catheter, this time on her right upper chest.
Thursday is a Rituxan treatment - she has had that with every chemo treatment, so no problem there.

Back on Saturday evening for Sunday and Monday. The stem cell mobilization starts then with a Cytoxin treatment and daily shots of growth hormone, all to get the stem cells growing faster.

More later - as the week progresses. Rick

Understanding comes slowly at times

OK, Adele is more afraid of going out of the house and having to be in contact with others until this bmt is done. Now that I know that, I can better understand what she wants to do.

Julie, Eric, Ruby & I will go to Tom & Shannon's for Christmas eve and join them in the 5 PM service and a dinner at their house. Almost forgot, Shannon wants to do lasagna, and here I was this AM talking through Christmas Day with Adele and said I should make lasagna. Decided on Pork & Sauerkraut since Julie will not be here in Jan for the traditional meal. Mashed potatoes we can get just over the mountain, so everything else is easy. No one else here Christmas day, just us and Eric, Julie & Ruby.

Maybe the 25th or 26th we can get over to see Jim & Shirley and kids, so they can get a peek at Ruby. Somehow we need to get to Bob & Bobbies also, Debbie should be there then, at least for a day.

Somehow, the Lord will provide a way to get everything done and everyone seen. Most important is the family.

Tuesday is JH for more procedures. It will get hot & heavy from here on out.

See ya - Rick

Mornings still a hill to climb

Adele is sure she is sick this AM. Last night she started re-reading all the JH facts and info about bone marrow transplants and found that her white cell counts will possibly be down during the mobilization phase. That starts Dec 21st and ends with stem cell harvesting around the 30th or so. Should we cancel Christmas, should we just wear masks, should we even go outside, except to JH during this period? All good questions for JH people next week while we are there for all the procedures then.

Carpets were cleaned Thursday so the whole house (except my office, nobody touches that) looks great and we are getting some food ready for Christmas already. Gifts are ready and wrapped, except for some large items.

I'm off to breakfast with Mom & Dad @ Oregon Dairy this AM, while Adele will stay at home again.

Rick

Just more things lining up

Made reservations for the week of Dec 27 - 31 for us to stay in Baltimore. That is the week they will be harvesting her stem cells for the transplant. We need to be close to JH so we are booked at the Sheridan Inner Harbor and have our names in for an apartment at JH (which would be much nicer). So that week looks set. Next week should be a go also, as we have not heard anything to keep us from thinking otherwise.

Getting ready for Eric, Julie and Ruby Rose visiting and Christmas time in our house.

See ya all - Rick

Mornings are the worst

Mornings are the pits around here. Adele is trying to get out and do things every day, but until she does, mornings suck.

She had a great time with Mom & Dad yesterday, shopping and lunching with them. Got to Matthew 23 in Lititz and loved just being out of the house. She should be at the top of her health right now, so this is no problem. Shirley and her are going to see Australia on Wed and I think she is planning some outside time today.

Mornings are just the time everything seems so overbearing when thinking about every thing she (we) will be going through. I keep reminding her, one day at a time, but I am NOT the one with cancer and how do I know how I would be with the same condition.

New pictures of Ruby Rose appear every day on Julie's picasaweb page. http://picasaweb.google.com/jooliepoison is the link to see them. Only 11 more days until they are in PA for the holidays.

Later - Rick

A shock this morning and another hill fought

OK, today Adele was at church to pick up flowers and get them to Mom. Of course the one person there, let her know that Derrick Dull had passed on Sat AM. Derrick had leukemia and a bone marrow transplant early this year, and just got married last month. His leukemia came back and he was back in Sloan Kettering.

This did no good for Adele, but she would have found out anyway as she had been watching his blog on and off, so it is probably good that I was home and we can talk about everything now. I did some loud talking and cajoling after she said something about not being sure about her BMT. End result is, I believe we are both more confident in the treatment, although it is a scary procedure, less scary since she is getting her own bone marrow. I believe as the doctors said, it is the best and most aggressive treatment available for her. I need her to be around for a long time helping with the spoiling of all of our grandchildren.

She went to lunch with Mom & Dad @ Luther Acres and is not back yet - 2pm - so I am assuming that she is having a good time talking.

Next week on Tues - Wed - Thurs we will have 3 more days at John Hopkins. Unless things change, I will have more to say then. Thanks for all the prayers, keep them going for strength in our hearts and allowing God to do the worrying for us.

Rick

A quiet Sat

Adele & I are having a quiet day today. We did get a store and library visit done this morning, so we have been outside.

Nice and chilly outside, reminds us of the winter that is coming.

More later - Shannon & Tom's church service tomorrow and grand children to visit with and play around with. Almost forgot to say, Tom passed all tests and interviews and will be a lieutenant next year. I am sure he and his family will enjoy the day work since he has been rotating shifts every month for the past 10 years.

I cannot keep a secret

OK, just gave Adele her Christmas gift, 20 days early. Got an 8" digital frame and loaded a lot of grandchildren pics onto it. Set it up in the family room and she loved it. Wanted her to have it for the JH stay so we can continually add pics while she is there.

I am stumbling around in this boot and she is talking with Aunt Bert for awhile. Long day and after supper is a good time to talk with others about how they are doing. Gets her through the evening.

Breakfast with Mom & Dad tomorrow - missed the 65th wedding anniversary celebration on Thursday so I will catch up with them. Maybe some running tomorrow.

Later - Rick

Dec 5th

Today started with viewing more Ruby Rose pics on http://picasaweb.google.com/jooliepoison cute in her reindeer antlers.

Adele visited the dentist and will go back for a cleaning next week while I visited a foot doctor and found that I have a broken bone in the foot. No wonder it has been hurting so much... Came out with a new velcroed on boot to help the bone heal. 3-5 weeks in the boot, could start weaning off of it around Christmas or so. Probably will need some help later with the high arch I have.

Adele is much more even keeled today in her thoughts. Medicine takes awhile to help but it does help. We need to be as positive as we can about everything that is happening to us. Nothing but relax and wait for results for the next 11 days, so there is nothing we can do until the 16th. The PET scan CD made it to JH today from LGH. They did receive one yesterday - but it was cracked and not readable, so LGH resent the CD.

Working on Christmas presents today - wanted to decorate outside this week, but this boot makes that almost impossible. No ladder climbing, stairs are hard enough. Cut off a leg of sweat pants so it is more comfortable (Thanks to Shannon, my most wonderful daughter-in-law).

More later.
Rick

First tests for BMT @ John Hopkins

OK, we spent the last 2 days at John Hopkins with them running all kinds of tests.
Appts started at 7AM on the 2nd of Dec, ending after 4:30PM with a tour of the IPOP on the 5th floor of the Weinberg Building. Of course we left Debbie's townhouse at 5:30AM to get there in time and found that it only took 37 minutes from her house in Pasadena to get to JH. 895 seems to have less traffic than 695, $2 toll takes a few people out of the mix.

Wednesday started later, with us leaving Debbie's at 6:30AM and arriving around 7:10 at JH. Parked at Weinberg Building again, same great space - too early for most others! Started appts at 8:30 and continued through 11:35 when we stopped and were successful in changing our 3PM to 1PM, so we could leave earlier. Everything worked out and we were able to get away by 1:45 or so.

Picked up Bathory from Bob & Bobbie's, she had so much fun being loved there. She came home, ate her dinner and went to sleep on all our bed pillows upstairs, just like she had never been gone.

Watched Shark Tale again, needed to unwind and not watch too closely.