Tuesday, March 31, 2009

Ruby's visit 03/30 & 31/2009 - Pics Posted

Hi all - you will find pictures of the last 2 days at my picasa site. Have to get to Lancaster for blood work this morning. Had a great visit with Tom and Kaelyn last night, we laughed many times as Tom did his voices for Ruby.

Later - Rick

Monday, March 30, 2009

Ruby is here!

Julie and Ruby arrived about 1 hour late at Philadelphia Airport - 9:45 or so. We got her bag soon after and went to South Philly to visit Ba-Ba (her paternal great grandma). Had a nice visit and got back home to Adele around noon.

Ruby is a charmer, always smiling and active - just like a happy 6 month baby. She crys when hungry and gulps the bottle and then a whole jar of food down. I thought I ate fast! Anyway, she slept well last night - only woke a time or two and needed her binky again. This morning I got to play with her 1 1/2 hours while everyone else slept. We had great fun, watching TV and rolling on the floor. Then I changed the channels to Contemporary Christian music and she enjoyed that for a while.

Adele is getting tons of Ruby time in so she is feeling great. She does need to rest and watch how much she does, so she does not relapse at all.

See ya later - Rick - I will post pics as I get them off the camera and have time - now off for supplies.

Thursday, March 26, 2009

Back from JH already

Adele's appointments were like clockwork and early in every case. We were out of the lab early, so we went upstairs to sit in the CAT scan area until her appointed time. Well, they took her paper work, got her in line and finished early. We got to the bone marrow around 10:30 and they took her almost as we arrived. The doctor came out and said he was running ahead, was that OK??

Adele finished up at 11 AM and we were in the car and out of the garage by 11:20 this morning, after we stopped and talked with Joanne in the Housing and patient center. We stopped at Cracker Barrel again and had lunch, with Isaac's on the menu for tonight (BOGO coupon arrived this morning).

Adele is feeling well and very happy right now, not at all worried about the tests, at leat not showing signs of that.

Thanks to all - Rick

JH Visit is started

We arrived at 8:20 after fighting through mild to heavy Baltimore traffic. I did make the fortuitous decision to use Rte 10 instead of Rte 100, which was packed as far as I could see. Rte 10 was 55 - 65 mph the whole way to 695.

I dropped Adele off at the front door, parked on the 3rd level down in the garage, in one of my 3 most favorite spots. Adele got a chance to go to the bathroom, and then checked in and took a seat. I of course needed to talk with the most gorgeous woman here, she helps people with questions in this area. She remembered me and gave me a hug, we talked about getting rid of the boot and how her daughter also had one, after a cast. Anyway, Adele got called in for the blood work, and I sat down to watch the belongings.

Schedule is blood work first, then radiology (probably CAT Scan) at 9:30, then bone marrow aspiration at 11:00 and that is all we need to do today. Should get home by 2 or so after stopping at Cracker Barrel either in York or Shrewsbury for a dinner.

Adele is contemplative - but seems good this morning. We talked about how these tests are just tests and not to worry about results, those will come April 2nd when we meet with Dr Meade.

Thanks for all the prayers! Rick

Day 64 and off to JH

We both had a good night's sleep last night. Debbie had a dessert for us when we got here, while I was able to get her Verizon FIOS internet working and her Outlook configured for email. I think excited is the best word for her reaction.

We leave soon for JH and the 8:30 appointment, so a quick breakfast and then drive to downtown.

More later - Rick

Wednesday, March 25, 2009

Day 63 - back to JH tonight

We are going to Deb C's house tonight to have an early start at John Hopkins and Adele's 60 day checkup, by my count about 4 days late. She will have many blood tests, bone marrow samples (from the hip bone) and probably CAT scans done. I offered to have her "cat scanned" here with Bathory, but she opted out of that scan.

She has had a good week so far, except for a possible "false positive" on the blood culture done last week. She had to go back and get it cultured Tuesday. That was the day she planned on getting blood work anyway, so it was no biggie, but mentally draining. She had a good discussion with Pastor Walter yesterday and seems contemplative since, but not depressed (hallelujah).

We will leave around 5 PM and stop at Cracker Barrel in Shrewsbury for dinner before getting to Pasadena MD and Debbie's house. Tomorrow morning we will probably start around 7:30 AM and join the rush hour to get to JH in downtown Baltimore. I will take the laptop and let you know what is going on as the day progresses.

Pray for good test results and a lack of any cancerous cells anywhere in her body. That is what I have been praying for all along, just want these tests to confirm it.

After this tests will be at 6 months and then yearly for five years, once we confirm all is going well.

Thank you all - Rick

Sunday, March 22, 2009

Mason's Birthday Party


Yesterday we went to our Grandson's birthday party. Just getting out and thinking about something else was very helpful to Adele, as she did not even think about cancer for a whole afternoon. She is tired today, as we left here before 1 and got home after 6, so we had a full afternoon for her.

Today is a outside work day for me, and I hope to get her out sometime this afternoon in the Vette for a short drive. Hoping a get away from the house will help her again today.

She did improve yesterday and sent the JH doctor some questions about her blood numbers. Dr Meade @ JH sent a reply, which she got when we returned last night, and he said not to worry - it is all within a normal range of recovery. The doctor in Lancaster is just not used to seeing slow recovery, while the doctors in JH do hundreds of these a year and have the experience with them. Again, we need to trust the doctors and let them (and God) worry about what might be later. We still should be living today for what we have today, and not keying in so much on what could possibly go wrong all the time.

Adele will probably be on an up and down cycle for many more months.

Ruby & Julie are coming in 7 days and we are looking forward to having them here. Adele was wondering about holding Ruby - I said "You had better hold your grandchild!" Counts, even though low, are still not at a point that we need to be so cautious as to keep away from everyone.

Thanks to all for the support

Rick

Saturday, March 21, 2009

Day 59 - Mason's Party Day


Today is Mason's 5th birthday (family) party. A beautiful day outside, perfect sunny skies and fairly nice in temp - around 55 for today. We should be celebrating and joyful, but after a night of little sleep and worry about the doctor's call last night - Adele is still in bed - almost 9 AM.

The oncologist called last evening before supper and was a bit worried about some of Adele's blood work. Apparently the platelet levels are not coming up as well as he had hoped for. There was also confusion about what he said about the white cell count - she says 2,800, I say impossible without him wanting her in the hospital right away. Probably was 28,000 but without calling him, I will never know.

She is still planning to go to the party, but did say last night she will need to wear her mask. If that is all she needs, OK, but I am worried about her mental state right now. She just wants to go where I personally do not want to go.. I am the positive person in this partnership and want to know that this disease is gone, and these numbers are just a glitch.

Pray for her peace with waiting on the tests next week, and letting God take care of tomorrow.

Leave the phone calls to a bare minimum this weekend, she can call out if she wants. She needs rest, peace and something to take her mind off cancer more than anything else. Hopefully that is what the party today will do for her.

Thank you all - Rick

Tuesday, March 17, 2009

Day 55

OK, since we pulled the IV on Saturday, Adele has been enjoying showers that do not need a lot of preparation to take. Her arm (torn skin) is getting much better and she is no longer having to cover it every day. Everything is healing well, and she has driven to an appointment yesterday and today - for the first time in a long time.

Today was the bi-weekly blood work, so we will know more tomorrow about that. She also has been walking around the block, and is doing it without any feeling of exhaustion, like last month. She is cleaning up meals, and washing dishes. Light cleaning and laundry also. So - she is feeling great and better every day. Today with the sunny weather, she is really feeling good about how she feels.

We have been blessed so many times, and I am so happy to see her feeling so good.

Thank you all - Rick

Saturday, March 14, 2009

Last Infusion done

We celebrated the final IV antibiotic at 9 PM when we took out the final treatment and removed the IV line. I took a stubborn Adele outside and lit the fuse on a 16 shot firework. Had a great time watching the fireworks, went inside and returned to the movie we were watching. Finished the movie around 11:45 and now to bed.

This is the first night in 6 months that Adele can (and probably will) turn on any side she wants to. She can sleep any which way she wants. Finally!

Good night to all - Rick

Day 52 is last day for IV

We started the second to last IV infusion of antibiotic at 7:30 this morning. Tonight at 7:30 is the last treatment, and the IV can then come out. This will be the first time since last September that Adele will have no catheter in her body. The ability to be free of them and take a shower without using "Press 'n Seal" to cover them will be a freeing experience for her. Fireworks are planned for tonight - unless wind or rain keep it from happening. I will also love that I will no longer have to hold 2 or 3 times a day open, to flush the IV or catheter or change dressings.

We are planning on attending small group tomorrow, for the first time in a year or so. Excited to see Adele is willing to get out a bit more, after we talked about it yesterday. We visited the snow geese yesterday, and actually saw some hunters setting up quite a lot of snow geese decoys. I noticed the poles sticking out of the ones that seemed to be landing - and remembered the article about this in the Lancaster newspaper.

Today I am making some brownies and Chicken 'n Rice for Molly. Hopefully I can also get out and do some yard work for the spring. Maybe all I will do is just pick up the old branches that this winter pulled down. Backyard also needs to have old ornamental grass chopped off, tons of debris raked and other plants trimmed. The tulips are already coming up and I guess the snow flowers will be there soon, just to be eaten by the rabbits. Or did I dig all of them up last year?



Small problems last night, but the home nurse called back and said it was OK to have the IV looking like it does. The IV seems to be out 3/8ths of an inch, but is feeding into the vein OK, so everything is good to go. Adele's arm is also healing nicely, with the washing and triple antibiotic being used once a day. Only one spot looks like it stuck last night, and that should heal OK in the next few days.

So - things are looking good and we are both able to do more with Adele getting stronger every day. We do need to keep our eyes and faith looking up to Jesus and His healing touch. He has helped us many times in the past year and a half, during this entire journey. Thanks to Him and all our friends for everything.

Our friend Somsavath had to go back to the hospital last week, but I think he is home again. Pray for his healing.

Thank you all - Rick

Friday, March 13, 2009

Friday morning and good so far

OK, Day 51 is here without any big events in the past few days. We had (2) VNA nurses here on Wednesday to change the IV to the right arm and take blood. The IV they put in has an extension and is much easier to use than the LGH one. And - the blood tests were checking out levels, specifically hemoglobin (Tuesday it was 8.6, and should be 12) and platelet levels. We are guessing they both were OK, as the doctor did not call and have us go to the hospital for a transfusion to get the hemoglobin level up.

So daily tasks are down to infuse Adele's antibiotic twice a day, flush with saline and heparin before and after, and secure the IV. Sometime around 2 - 3 PM we also flush with saline again. Every morning (and evening before yesterday) we also wash and soap down Adele's arm where the skin is torn, and treat it with triple antibiotic gel and cover it with gauze. Of course, I am still in charge of cooking, cleanup and all laundry. Gotta vacuum sometime also.

Other than that we are doing well and have very few problems right now.

Pray for Molly's quick healing and future surgery.

Thanks to all - Rick

Tuesday, March 10, 2009

Day 48 and it is getting better

After last Sunday at the emergency room and all the bleeding, it seems like nothing is happening. All we need to do every day is an 8 AM & 8 PM antibiotic IV - started with a flush of the line, and ending with 3 separate flushes of the line. Then everyday around 1:30 PM or so, we also need to flush the IV line with saline again. Of course there is the removal and repositioning of the stretch wrap over Adele's hand every time we flush... Also we clean and dress, twice a day, Adele's torn skin on her right arm. Clean with a warm towel, then with soap, then clean again, then triple antibiotic gel and finally dress it with gauze.

Gee nothing is going on during a normal day, only takes a few hours to do all that anyway.

Today the doctor allowed us to have Bathory back from Bob & Bobbie. She (the cat) has been gone from our house since Dec 15th or before, and Adele is seeing her for the first time since. Bathory is on her throw at the end of the sofa and watching news with us right now.

Tomorrow, the visiting nurses will be here to change the IV from her left hand to the right, and allow us to finish the antibiotic IVs - going through Saturday. Sunday they are scheduled to come and remove the IV as that is all it is needed for. Finally, nothing sticking in Adele, first time since about last September, guess I should look that up. Adele will love taking a shower without having to waterproof some object sticking in her body. As I will love not having to get that all prepared and flushed.

So - if all goes as it should - these postings will become fewer and fewer until some appointment or test results are in. Days should start being much more normal than they have been for 6 months or so. Our next test at John Hopkins are on March 26th with a follow up with the lead doctor, Dr Meade, on April 2nd. He will go over all the scans and let us know what the first major tests show.

Oh - our grandaughter (and daughter) are coming in from Georgia to visit from March 29th through the 4th or so. That will be a great time for us also, as Adele has not seen Ruby since she was born last September and misses being able to hold her. Adele will also be able to visit our Harrisburg grandkids, whenever they get a chance to be free for a visit. Oh - Kaelyn did cartwheels for Cancer for 10 minutes last Saturday, and she was so excited to let us know that she did 148 cartwheels in that 10 minutes. Shannon said she was still standing even after all those cartwheels. We had nurses here during the time we would have had to leave, so we were unable to get there.

Thanks again to all who have helped. My broken foot is healing and as spring is coming, just in time. Hopefully I will be able to do some yard work this weekend.

Again - thank you all
Rick & Adele Stauffer

Sunday, March 8, 2009

Day 46 - What a wonderful Day - Spring is here

We woke early (at least I did) and had a lazy morning reading the paper, giving Adele her antibiotic and enjoying the fact everything looked OK. Mom & Dad stopped by after church service and we called Isaac's for our lunch. After a great lunch and conversation, they left and Adele laid down on the sofa to read and keep her arm stable.

After so many dressing changes this past week, her right arm is missing patches of outer epidermis and is very sore to the touch. Again everything looked OK, so I went upstairs to compute and have a relaxing afternoon.

Then at 1:30 Adele called me in a weak voice, and when I went downstairs, she was holding a towel against a bloody and dripping (blood) arm. Just laying down apparently started the blood flowing again. We called the nurse again, and after 2 return calls they said they would be there soon. She got here around 2:30 and after spending 20 minutes taking the old dressing off, and trying not to get blood everywhere, spent 15 minutes trying to stop the flow.

OK, now the home nurse said to call the doctor. Which one? The Infectious Disease one or the Oncologist? Figured the ID doctor ordered the PICC line and that was the one bleeding, so called them. The on-call doctor called back, and agreed we should go to the emergency room, but asked us to call the Oncologist and have them as the admitting physician. OK - got through the second time, as we were getting to Lancaster, and he OK'd the emergency room approach.

Got to the emergency room at 4:30 and just got home at 7:45. Short version is the PICC line is removed and a regular IV line is being used. The IV nurse had to hold pressure on the wound after removing the PICC line, for over 10 minutes. She then cleaned up Adele and added a pressure dressing over the IV dressing. Also advised cold compress for the next 24 hours.

So - Adele has a problem with any of these catheters that have been used in her the past 7 months. We should know by now - problems will occur. We are both exhausted, weary and just waiting to get to bed. IV is running now for the night's edition of antibiotic and then we flush the line and can do something else - like sleep.

Praise to our Father for allowing us to have such wonderful care while Adele is going through this. I did pray for patience last year, and I am guessing He is teaching me that right now.

Thanks to everyone - Rick

Saturday, March 7, 2009

Day 45 over

On Friday Adele had her dressing on the PICC line changed twice. We had the nurse here at 8:15PM to do the evening change. She put gauze under the dressing in hopes to stem the blood flow that keeps happening. The same nurse stopped Saturday morning around 8:30 AM and checked it, changing it to have no gauze under the dressing. Well, Saturday afternoon when Adele took off her sweater, the sleeve of her shirt was bloody and the nurse again had to come this afternoon and change to gauze under the dressing. If it looks OK tomorrow morning, we will be OK until the normal appointment around 8:30 AM, when they need to draw blood and check many other items.

So a few long days and Adele has done well during them. She is looking a bit better every day and we also took a walk this morning in the 70 degree weather. Tonight we loose an hour of sleep, so now is the time to get to sleep.

Good night to all - Rick

Friday, March 6, 2009

Day 44 - Emotions are all over the place

OK, I admit it, I want to be joyful, happy and celebrate the "Last Rituxan Treatment" today. Barb F just picked Adele up to go to the Cancer Center at LGH for her last treatment. BUT, she noticed a bit of blood on her arm where the PICC line dressing is. Not surprising to me, and it probably happened during this mornings IV treatment. Somehow the line got tugged and started the bleeding again. I got it stopped, and used gauze to dress the area where the blood was seeping out oif the dressing.

My reaction was as normal, "Let's fix this then call the VNA." Adele on the other hand is all emotions and rightly so, she seemed OK, but then tears about how this will stop her Rituxan and she will need to reschedule everything. This before she had even called the VNA.

OK - she called them, they returned the call and setup a date with her at the Cancer Center to redo the dressing while she is there this morning. Should be OK now, but I found her mumbling about how heavy the bags were (some books and blanket, and in her purse about a 1/2 lb of change). Of course we needed to get in another cry about this. I know she is ok with the crying, just her way to release feelings.

BUT, I keep trying to Rejoice in the last treatment idea. I want to take her out this weekend, but I am now more and more sure she will not want to set foot outside of this house for a few more days. We do hope to see Kaelyn turning some somersaults at Harrisburg - 10:30 AM on Sat.

Gotta go - customers are getting demanding. More later - hopefully with a brighter tone.

Thanks all - Also wanted to say, Somsavath arrived back home in Vientiane today

Thursday, March 5, 2009

Day 43 - Emotions overflow

Today we had the VNA (Visiting Nurse Assoc) here and she taught me how to care for the PICC line they have for the antibiotics. Was easy to understand as I had cared for Adele's hickman and pheresis IV lines before this. The nurse showed us how with an extension, I could start the IV and Adele could disconnect it and flush it after if it was necessary. We plan on 7AM & 7PM for the IV, so I should be here at all of the times needed to start and finish the IV. Oh, didn't mention it is an hour long process for the IV to complete the infusion.

The VNA will be back Monday to get blood for the doctor and change the dressing.

Once the nurse left, and Adele was able to think about breakfast, she broke down and cried for awhile. I had a bowl of oatmeal with her, to stay with her and talk if she wanted to. She is just wanting so much to be "normal" again. I thought a trip Saturday outside the house would be good. We will see what she wants to do, and then try to do that.

Pray - as always - for strength.

Somsavath is going home Friday! I am sure that pleases him and Thip. Continue to pray for his healing and strength.

Thanks for everything - Rick

Wednesday, March 4, 2009

Day 42 - Adele is HOME again

WE got home around 6 - had some homemade potato soup (Thanks Elaine) and I finished up the small amount of dish washing. Now we can read, TV, talk - whatever - without having to get into the car to get to each other. What a freeing experience this is.

Adele will be getting IVs twice a day for 10 more days - make sure we kill that infection. Home nursing is coming tomorrow 8:30 - 9 AM and planning on teaching me (the klutz) how to do this myself. Should be a cake walk.

Now to the relaxing! - Oh a new pic of Ruby and her mommy Julie just arrived..

Thanks all - Rick

Tuesday, March 3, 2009

Day is done - 41 is over

Adele had a good day, with all the visitors and good news. Her blood work was negative for infection, and they tested her again today to look again tomorrow morning. Dr Balepur told her to go home Wednesday, and if she really liked staying there when she said something about waiting for the blood test results. He is positive it will be OK, and has ordered a PIC line done tomorrow, just after the results are back.

So I will be at LGH from 10 AM or so, until I can bring my girl back home again. New sheets arrived today, but with a new PIC line in, we decided against using them right away. After 20 or so years, I decided new sheets to go with the paint in the room would be nice. Good deals online, so 2 sets are here and waiting.

I just got back and will make supper and watch some TV tonight, but then to bed and up early to get prepared for Adele coming home. Wash to do, things to clean and such.

Thanks for all the prayers. - Rick & Adele

Monday, March 2, 2009

Day 40 - Still at LGH

Adele is getting tired of being in a hospital and I agree.

The doctors have decided on what antibiotic to use, and it happens to be the same one they have been using all along. They continue to take blood for cultures, to see if the staph infection is gone. They plan on insetting a PIC line, which would allow her to be at home and have home nursing come to do the IV of antibiotic. I think it will be 10 days of IV 2 times a day, at least that is how they are doing it now. The PIC line will not be inserted until all the staph infection is gone, so she remains at LGH until it is out of her.

Her platelets have come up, but then again she got a bag of platelets on Sunday morning before the surgeon removed her hickman port. White counts are dropping, but again her body is fighting the infection.

Tom & Shannon are visiting tonight, I am not sure if I will even get a chance to see her tomorrow, so much to fix in Lebanon.

She canceled the blood work appointment tomorrow, and the Wednesday scheduled rituxan will be put off until Friday or later. So - everything is in a state of ever changing flux and we thought that we were at a point of getting into a routine. Hard to be jerked out of that hope of normalcy, just to be pulled back into the "What are they going to do to her today" mode.

She and I are both taking this much harder than we should, but I do believe that she will be home for the weekend.

Pray for peace and strength for us both.

Thanks, a mentally exhausted - Rick

Sunday, March 1, 2009

One more day at LGH

I am not sure how many days Adele will need to be at the hospital, but it should not be too many. Our oncologist said he would see her on Monday, so we think she should be there at least that long. Someone there said she could have antibiotics intravenously and be at home, with home nurse assistance. They started her on antibiotics last night. Using the strongest dosage, two hours of IV and having it twice a day.

Today is a day of action. They will find out what type of staph it is, and use a more targeted dosage of antibiotics (the cultures take 24 hours). She will get platelets this morning, since her platelet count dropped this week again. It was 19K on Friday the 20th, then she got a bag and it climbed to 32K on the 24th. Then Friday this week the 27th the count was 20K. She needs to get that count to 50K or so.

Once the platelets are given, the doctor will come in and remove her hickman catheter at bedside. The doctor at John Hopkins removed her pheresis catheter in about 5 minutes, so this is no big deal.

Once all that is done she should have a day of just being checked on once in a while. Besides the antibiotic, she is not getting any other treatments until Wednesday. Rituxan is scheduled for then, and is to be her last treatment of that.

Bob, Bobbie and Debbie C all plan on seeing her this afternoon.

Until later - Thanks for all the prayers.

A side Note:
Somsavath in Laos is much better and he and his wife Thip, have moved to a hospital apartment, and out of the hospital. Besides some treatments yet to do and checkups, he is on his way home sometime this week. His brush with cancer is turning out OK. I know you all have helped there - Thank You again for all the Prayers.

Rick & Adele