Saturday, January 31, 2009

Day 10 Afternoon


Adele is up and working at getting a shower. Here she is smiling with "Faith", her IV Pumps on the pole. She has 3 IV tubes running into her 2 ports on her hickman port. One of the IV tubes is from a morphine pump that she has not had to use since they put it on "Faith".

We had a relaxing day and I will be leaving in about 3 hours for Debbie C's and supper.

Thanks again - Rick

Day 10 after Transplant

I walked into Adele's room about 9:15 this morning and found a very exhausted woman. She has had a very bad night - a fever during the night - still too much pain while moving her bowels - and more weakness than up to now.

First off they plan on having her chest X-ray done to check her - ?? because of the fever. Next they have ordered a morphine pump, so she will control when and how much she needs. Last night they gave her 1 mg shot and then 2 mg more. She said the 3 mg took care of most, but not all, of the pain.

I helped her change her pajamas to a fresh pair and new underwear. She is having much trouble even getting standing - she is so weak. I helped her stand, and put her in the (kind of like) lazyboy chair so they can clean her room. I left to do this blog while they clean the room and she reads a bit. This morning she is just happy to have me here and hear my voice next to her. Do not call her until I see improvement here. She cannot get to the phone anyway.

I put away the wash I did for her, the toilet paper I brought and other supplies. She is also happy to see the white count start to rise. The 8PM blood test last night showed a WBC of 60 - a good increase from the <50 (basically no WBC) the past two days. The stem cells and meds are starting to work?

Pray for strength - in Body - Mind - Soul she needs the prayers in all 3.

Thanks to all - Rick

Friday, January 30, 2009

Day 9 Afternoon

Adele has been resting almost the entire day. She is getting morphine, finally when she needs it most, after a bathroom visit instead of a scheduled dose. That might allow her to get less and have more relief from the pain.

I will stay until 6 or so and then go shopping at Safeway for needed items. Then back to Debbie C's and the washer and dryer to get laundry done for Adele.

We will get out for another walk - she was able to walk for 8 minutes last time. Then she will get her supper soon and I can get going.

Thanks to the Lord for His Love. If you get the World Vision newsletter - there is an article about LCBC in this month's issue. Please read it while considering a child to sponsor.

Rick

Day 9 post BMT

Adele was ?sleeping? when I walked into the room this morning. She tried to talk with me - but she is at a point of almost asleep so I told her to just sleep.

They started giving her morphine last night for her pain. I know how vicodine reacts with her, so I am assuming the morphine is partially responsible for the sleeping this morning. She said she was waiting for the next dose at 11:30 AM as I walked into the room. It apparently helps very much.

Numbers on the blood work are mixed this morning. Liver numbers dropped again, and that is a great relief. Platelets are dropping again - she had at least 3 bags of platelets this past week. White blood count is still <50 or basically nothing while red blood counts are higher at 31.7. She is getting growth hormone shots to help the WBC counts so that should get them up soon. She received 2 bags of red blood cells yesterday afternoon, so of course the RBC is up today. Will keep everyone posted as things develop.

I still believe this weekend is going to be a time that these numbers will start their upward climb - on their own and not buoyed by transfusions. No facts to support this, just a guess at averages and what Adele's numbers have done in the past.

Keep us in your prayers during this Super Bowl Weekend.

Let Adele call out to people this weekend - please hold back calls to Adele. Let her reach out when she is awake and ready to talk.

Thanks to all - Rick

Thursday, January 29, 2009

Day 8 afternoon

I arrived a few minutes ago and Adele is feeling good. Still weak and hurting but the doctors said the liver counts are coming down (that's good) and she is in much better spirits. She looks better than when I left her on Monday afternoon also.

Maybe this is the turning point. We will see on the counts as the days go on.

A friend stopped this morning with Adele and said a prayer with her.

Thanks to all - Rick & Adele

Day 8 at JH

Talked with Adele last night around supper. Still a bad day for her. She is having more pain than she thought she would ever have, but is encouraged by the probability that Wed & Thurs should be her lowest point for blood counts. Mouth sores are also developing and make eating and drinking very hard to do. We both expect that her blood work numbers should start climbing again very soon. Once that happens, this horrible experience will be behind her and there is nothing but better in the future.

Right now she is exhausted by everything she needs to do. Eating tires her out, but then she has to go to the bathroom and that is painful. Sitz baths are a relief, but are again very tiring and she then needs to wait for the nurses to clean up the bath, so she can use it later. Walking is a tiring exercise, but she tries to do it. She sounds very tired on the phone and is prone to tears while talking about what she has to do daily.

She has been leaning heavily on God and me for support this week and is hopeful for better times to come soon.

I am driving back this morning, as soon as the sun comes out to help with the icy spots on the road. I also do not want to be in any work traffic - rush hours - as I prefer driving without all the bumper to bumper traffic that develops in Baltimore. Packing and washing things to get ready and I am almost there. She will be pleased to see me again. It is hard to come home, but I must get some business done also.

Pray for physical and spiritual strength. I believe we are past the downside of all the chemo treatments and have nothing but getting better left. Pray that complications do Not happen.

Thanks to all - and our Lord God - I will try to post more when I get to Baltimore today

Rick

Wednesday, January 28, 2009

Day 7 @ J Hopkins

Talked with Adele this morning. She is feeling (hopefully) at her lowest yet. The doctors are worried about the liver numbers. They will do an ultrasound today to check on any liver damage.

Pray for liver damage - if any - to be minimized and at best no damage.

She is very weak and has had nurses doing things to her every hour or so, and has not been able to get a good sleep at all. She was weepy talking with me and knew she would feel this way, but hates it anyway. She is also having sitz baths every few hours to relieve the pain she has.

I still have a few items left on my schedule, then tomorrow I plan on getting back to JH and Adele for the next week.

THANK YOU to Steve F from across the street. He just did my entire walk and drive with his snowblower and saved me getting a wet foot. I am still in my boot that the foot doctor has me in to heal the broken bone in the foot. It is open to weather and when it is wet out, like today, I get a very cold and wet foot.

Thanks to everyone that have been so understanding and helpful in the past few months. This is hard to do, and Adele and I appreciate you all so much. We will never get to repay all the kindnesses we have received from everyone.

Cards as always to our home in Ephrata and then I can clean them off before getting them to her.

Again - thanks for all - Rick

Tuesday, January 27, 2009

Day 6 and everything is as it should be

First off - Adele is very weary and has a problem doing anything right now, but that is exactly what the doctors expect at this stage. Her platelet count is very low, so she got a bag or two of platelets last night. Her white and red counts also are dropping yet. This is to be expected. A slight fever last night had the nurses calling the doctor, but it was not enough to do anything. The fever abated later, so they just continued to check her temp all night.

This morning she was told by a nurse that her symptoms are right in the middle of what they expect. She had about a 5 minute meeting with the doctors, as she is doing so well and going in the direction they expect. OR in other words - she feels so tired she does not want to do anything, is going to the bathroom often and eating and drinking slowly. She was told that the walking will help the counts get better, so I think she now has a reason to get in the hall and walk.

I am trying to clean up the mess at home, and work with customers today, so I can get back later this week. Too much to do in a short time, and I already want to get back to her. I am making Taco Soup for tonight and this week - maybe I will take some to Baltimore with me. Almost forgot, I drove the Regal down and on Sunday got a "Service Engine Soon" light, so I came home Monday afternoon instead of Wednesday late evening. The thermostat apparently decided to go bad while I was there. Also time for an oil change and inspection, so they are getting it done for me.

Prayers for Somsavath & Thip
Prayers for Adele's physical strength to return and the mucositis to subside. See http://en.wikipedia.org/wiki/Mucositis for more explanation of what it is.

Thanks - Rick

Monday, January 26, 2009

Day 5 in John Hopkins

Adele is being bothered by mucusitis and weakness today. She will probably be in bed more today, as she is right now. Started on GCSF shots again, which will help white blood cells grow. She also got a nasal swab, as everyone will on Mondays from now on. They are culturing all patients every week this way, as another way to see who needs help with what. I am sure they are looking for colds and flu viruses.

Thank you all - Rick & Adele

Thought I would add, she took a shower while I was here, and is starting to have a difficult time doing some of these things by herself. Weakness is showing up there and as we walked around the hall this morning. She is shuffling more and much slower in her walk, and made it around 3 times only. Adele was ready to sit and rest after the shower and walk. Numbers are still trending down today, 22K/80/29.9 are today's numbers. Actually they are last nights numbers. Blood is drawn every evening around 8 PM, and then in the morning the nurses put them on the board for her to see.

Please do NOT mention numbers to Adele - she does not even want to know which number is which right now as it just gives her anxiety attacks when she gets to thinking too much about what they mean!

Sunday, January 25, 2009

Day 4 and all is well

Adele had a good night, although the chemo is wearing her down more each day. She is resting as I type this, after we did 2 rounds of the halls first. Still some diarrhea hitting her, but she is eating well enough anyway. Imodium finally given just now, hopefully that will help firm things up.

She is covered with Mrs Zimmerman's quilt that she got years ago. Adele taught kindergarten when Mrs Zimmerman made it for her. It keeps her so warm and comfortable. Anyone who knows Adele understands how cold she gets when she is well, let alone now that the chemo is in her body. My thoughts and prayers have been including Mrs Z and her family as the quilt has brought Adele so much comfort.

Today, I was driving in to JH and saw a "Service Engine Soon" lamp on, so it looks like I might need to get back to Ephrata sooner than I expected. I might just go back on Monday afternoon and leave the car at Sauder's until I get back again. I can always get back here on Wed afternoon, using Tuesday and Wed AM for business instead of Thursday and Fri AM. What else will this Regal give me headaches with? Only has 87K miles - it should go for quite a while yet.

Thought you all would love to see the other grandchildren that Adele has not seen since ?October?. She does miss everyone, family the most, but everyone else she talks and works with on a normal basis, during a normal year. Last time we were normal more than 3 months was in the first half of 2007. Since right after our daughter's wedding in Sept 2007 we have been fighting this cancer. Would be nice to see the "skater dudes" again.




Love ya all, Rick & Adele
Prayers for Somsavath & Thip also, as they start on the journey of healing.

Saturday, January 24, 2009

Yes we are here for the long run

We keep getting asked "now that the stem cells have been transplanted, when are you coming home?"

We want everyone to know - the lowest point has yet to come.. Adele's blood numbers (white, red and platelet counts) will continue to drop through next Wed or later. Once they do start the up swing, they may go up or down from day to day before they finally get going up for good. Once they get high enough, she will be discharged - but only to out-patient status for 2 - 3 weeks (or more), and we will need to visit IPOP every day during that period.

Adding up everything, we are looking at some time around Feb 25th as the earliest that we could actually come back to Ephrata. Yes - this is a long time, but totally necessary, as we will need to be within 1 hour of the hospital for those last 2 - 3 weeks. Hopefully we can get one of the apartments across the street, and not have to worry about driving in everyday.



Missing our Ruby and other grandchildren.

Thanks for everything - The Lord is here with us everyday - Rick & Adele

Day 3 at JH

Adele had a good night's sleep and feels good after a morning shower. Doctors said everything looks to be on track with expectations so far. Her diarrhea continues to plague her, but she is eating well. Yesterday she got 2 bags of blood transfused to increase her hemoglobin levels, a normal thing around here. She is also getting antibiotics on a normal basis, could be another cause of the bowel problem..

Today nothing planned so far, she did cut her finger slightly, so she has a supply of bandages to replace one if it falls off or gets wet. She uses gloves to do anything that could infect the finger. She is resting now while I type and feels good.

Tons of cards and emails for Adele. I try to put the cards on the wall, but I also keep busy redoing them, as the walls do not hold them well enough. Will stop at Walmart this afternoon in search of socks for her, as she really only has 3 old pair. I do not want her to use her support hose here, as we found a red line at the top of where the hose ends at the thigh.

See you later - we are doing fine today! - Rick

Friday, January 23, 2009

Day 2 at John Hopkins

Adele is feeling better today and is happy I am here today. I stayed through supper (Subway meal for me) and had a chance to talk with a friend we met earlier.

Dusty & Rich Garrison are going through something almost like Adele is, with Dusty's treatment being much shorter. She had 2 days of chemo and then got her own stem cells back. They were almost ready to leave Tuesday but she developed a urinary tract infection (seems most get it) and also a chest cold. The doctors decided to admit her to the hospital, 1 day before they were leaving for VA and home. She had been doing everything as an out patient. Rich just told me that they are enclosing her in a bubble and doing a treatment that takes 3 hours to complete, then the entire room needs to be cleaned before Rich can go in and be with her. He needs a space suit to be with her any other time. She gets these treatments maybe 4 times a day. So Rich does not get to spend too much time with her.

Pray for healing for Dusty, she would appreciate the help. Pray for strength for Adele as this stay at JH continues. The doctors this morning told her she is doing well.

Thanks to all - Rick & Adele

Thursday, January 22, 2009

Rick's Day at Home

OK, so I came home to Ephrata on Wed night. Of course Adele gets the worst side effect Wed night after I leave and I only hear about it on Thurs morning. Well I did get to go to the foot doctors, Mom & Dad's for lunch, Molly & Larry's to chat, Post office for mail, Weis Market for food stuff, Bob & Bobbie's to visit the cat (Bathory), the UPS store to buy some copies (5K at $159) for LCCC and did all the wash, but not in time to send underwear with Yvonne who went to visit Adele today. And to top it all off I have a computer problem with email on the laptop, the data file is corrupt and of course UPS delivered the new Vonage router and I set that up also.

Any more to do and I would have blown a gasket. I think I will sleep in and get back to Adele tomorrow afternoon. Everything here seems to be OK and working well. And I miss her too much to spend another lonely night here anyway. Can't stay away for more than a day and a half - want to be there for her to lean on. That's what 38 years married does to a guy, can't be comfortable alone. Adele did say she had a slight fever this morning, so they were working on that, but she did get a chance to walk also.

See you all tomorrow. Rick

Wednesday, January 21, 2009

Day 0 - Stem Cells arrive

Today is the BIG Day!! Stem cells arrived in a Cyroshipper using Liquid Nitrogen and were warmed by a steam bath of Sodium Chloride, to body temp. The bag was hung with the sodium chloride solution (SCS) and dripped, via gravity - no pump, straight into Adele. The stem cell bag emptied quickly and was rinsed with SCS 3 times to make sure every cell was given to her. Next the second and last bag was done the same way and she has now been given her stem cells and is on the way to recovery!

Praise the Lord God Almighty for everyone that has helped in this process.

Pic one - Lab Tech with his cart.


Pic Two is the hanging of the first bag of stem cells.


Pic Three is Adele gazing at her new stem cells and the bag

Tuesday, January 20, 2009

Day "-1" at John Hopkins

This morning at 6 AM, Adele received her last Cytoxan chemo treatment. Yes - no more chemo for her is scheduled, or needed! Tomorrow is her new "BIRTHDAY" being Day 0 on the calendar. I never expected her to have a birthday so close to mine.

She will receive her stem cells back tomorrow, I will take a picture of that for the celebration. From now on she just needs to get better. Of course, the next 10 days or so will be slowly getting worse for her. The chemo will act to drop her numbers - white cells, red cells, platelets - and probably will increase her liver numbers. Around Day 20 (from Day 15 - 25) will be the time we should see improvement in the numbers enough to be discharged.

For now, she is doing well and walking as much as she can, looking at the photos on her frame and enjoying time to watch TV and read books. We will keep TV on all day for the inauguration ceremonies. Baltimore traffic at 10 AM was no problem, seemed more like a Saturday, I am sure everyone wanting to get to Washington was already there by 10.

The doctor just asked her if she was ready for the transplant tomorrow. Nothing else was mentioned, so the nurse told her that is unusual that they had no other comments, meaning she is doing great!

See you all later - Rick

Monday, January 19, 2009

Pheresis Port is OUT!

I came back from lunch and found the doctor and nurse in Adele's room, talking about what he needed to take out her pheresis port. I decided to go to the waiting room and stay out of the room, keeping my dirty body? out of the room while he pulled it out. Apparently it took all of 5 minutes to pull the tubing out and patch her up. Now she just has the hickman port - no port in each side of the chest anymore.

Hooray!

Today is MLK Day and a holiday for the hospital. I should have guessed it when I got here and the garage was mostly empty. Anyway, Adele is doing great and had a good rest after her lunch (I was gone) and was woken by the doctor.

Thanks - Rick

JH and Day "-2"

I arrived at 10 AM and decided to just go into Adele's room. Forget the 11 - 10 visiting hours, no one flinched to see me an hour early. We miss each other and so who cares if I get here early, they understand.

The doctor told Adele she would have the pheresis port pulled out today, and get platelets if they felt it was necessary (her platelet count was 159,000 yesterday - a range of 150,0000 - 400,000 is normal) to help with the clotting and healing.

She has been up since 4 AM when they started this round of chemo. At 4 AM they start fluids and pre chemo meds, then at 6 AM they start the Cytoxan and around 7 AM they go back to the fluids and meds. The Cytoxan is only about an hour, while the rest of the day is fluids and meds to fight the side effects. She has had some ill effects, not many, just some items showing the need for the meds.

She is, of course, tired and I told her to close her eyes and sleep. You know Adele, and that is impossible for her to do. Her doctor is aware I am here now, and promised to stop in to let me know what they plan for today. So if there is anything else for the blog after his visit, I will let you know.

Again - Many thanks to all that are helping - including this angel in disguise called Debbie. She is allowing us to stay (just me now) at her home in Pasadena and it allows me to be here on a daily basis, early in the morning. We also had a great time cheering on her team (Pittsburgh Steelers) last night as they went on to the Super Bowl. She also loves to cook and is keeping me fat and happy! This would be so much harder without her.

We love you all - Rick & Adele

Sunday, January 18, 2009

Day "-3" in John Hopkins

Last night Adele had to remind me about being in the room without my mask on. I got a Subway sandwich and instead of eating it in the cafeteria, I brought it back to eat with her in the room. Of course, you cannot eat a sandwich while wearing a "spit-guard" hospital mask. Duhhhh. After a few words, that I would dearly love to take back, I left and went to the lobby to eat alone. Next time I will think better and eat in the cafeteria.

Now just to get into the room and be with Adele for the day - maybe watch some football.

Thanks all - Rick

Saturday, January 17, 2009

Sat the 17th - My Birthday - Back to JH

OK - I admit it - I missed Adele so much I came back early. Of course I forgot Obama was coming to Baltimore, and that traffic would be worse. I did not think they would close Rte 83 and take everyone off it. They dumped me into a city street, along with thousands of other cars, near the Amtrak station. I only had to go in circles once before I got directions away from the mess from a policeman. From there the GPS got me through what I perceived as "bad areas" of Baltimore and to the hospital.

Got here around 4 PM - about 31 hours early and Adele was, of course, very surprised. We sat and watched Obama speak and now that I am here, I know why the traffic was so bad.

Adele is doing good - started on Cytoxan at 3:30 AM this morning and is "hooked up" to the IV pump until she gets out of JH as an inpatient. Now her spirits are a bit better than a 1/2 hour ago. Not sure why? I will stay until late and then on to Debbie's for bed and back in the morning.

Thank you all so much

Rick

Friday, January 16, 2009

Adele is alone today and Saturday

OK, I drove home, via Tom & Shannon's, Thursday afternoon. Celebrated our birthdays (Tom & I) last night and had a great time with the kids. Shannon had a delicious lasagna and Mason picked out the cake. I even got a bit of wrestling in with them - actually consisted of them jumping on my back repeatedly - and talked with Tom, Shannon, Jack & Trena. Tom was able to fill me in more about his new position, Lieutenant Stauffer, and what he will be doing this year. Maybe Captain Stauffer next year?

Anyway, I got home around ?10:15? and could not get to sleep until midnight. Up at 7:11 but the eyes did not really open until 8. Then coffee, washing clothes and checking with customers. Soon going to church to get payroll updated and then more wash to do. Also need to get year end work for the business done, so that will be next.

Adele had a good night sleep, a bit unsteady on her feet this morning, so they are checking blood pressure - laying down, sitting up and standing - three times in a row so they can see if she needs fluids. After a night of no fluid intake, it is possible that she just needs to drink water.

Other than that, she is doing well this morning and was cheerful when I talked with her. She laughed to hear that Kaelyn & Mason made a "Pin the Nose on Rudolph" for her hospital room wall. We will need to get a blindfold (or just close our eyes) and have some of the nurses try their luck.

More later when I get back to Adele on Sunday
Thanks to all - Rick

Thursday, January 15, 2009

A Quiet Day

Adele & I have had another quiet day at JH. Meds delivered, chemo delivered, food delivered - she has it so good..

I leave for home - with a stop at Tom & Shannon's first for his birthday celebration - around 4 or so. Watching Ellen with her right now, and just enjoying being here with Adele.

See ya all - Rick

Whoops !

I made a mistake - she did not get mouth sores with Cytoxan - that was another chemo drug.

Cytoxan is the drug that caused her liver numbers to go higher and other numbers, white counts - platelets - etc, to go way lower. That was just on one dose (1/2 hour infusion) of Cytoxan. This Sat, Sun, Mon and Tues has her scheduled every day for a dose of Cytoxan. You can see her calendar in the picture on the previous post - top right of the pic. The red "BMT" is day 0 and her new "Birthday" - January 21st - just 4 days after mine...

Pray for safe travel as I go to and from the hospital. Tonight is a trip home and back on Sunday.

Thanks to all - Rick

Day "-6" For Adele


Today is a continuation of Tuesday and Wednesday, with busulfin being administered every 5 hours instead of every 6. Her body is metabolizing the drug as it should be, so there were no more blood draws or recalibrating the drug dose - just a continuation of the same.

She gets doctor visits every morning, before 9 AM, with 4 doctors every day so far. There is no further word on the removal of the pheresis port, although it can be done at any time, they are probably more concerned about infection than any thing else. IE, when is the best time to do the removal.

She called this morning, is doing fine, a bit unsteady from the drugs, but otherwise fine so far. Of course the doctors let her know the heavy duty stuff will start on Saturday - Cytoxan is a mean drug. Many people here have expressed surprise that she has not been nauseous with the Cytoxan she received before. I remember that she had mouth sores, but they can dull that pain with a mouth wash. Other than that she had nothing more than a general tiredness. In fact, a feeling of total exhaustion was her latest side effect from any Cytoxan.

Both of these are easy to tolerate, and she will be blessed if that is what happens this time also. Although she will be receiving the drug 4 days in a row, not just one dose as she received in the past.

Pray for minimum side effects and maximum effects on the cancer.

As always - Thanks for all the prayers of healing - Rick

Wednesday, January 14, 2009

Quiet Day here at JH

Adele & I have been together since 10:45 this AM, and since about 1PM we have been left alone. Mornings are the busy time, while afternoons are apparently the slack time.

Chemo is every 6 hours, next time is 5 PM so that is coming up soon. I plan on staying until around 6 or so, maybe not get too involved with rush hour traffic out of Baltimore.

We are watching "You've Got Mail" on the DVD player and relaxing all afternoon. A few calls, plenty of email and good rest for her.

See you tomorrow.

Thanks - Rick

2nd Day as InPatient

Adele had as restful a night as you could have with people waking you up every few hours for blood draws, pills, temp, heartbeat and blood pressure. She was having breakfast when I talked with her this morning and she said the pheresis port will be taken out today or tomorrow. It is still weeping fluid and is not needed for anything else, so there is no need to keep it in. Her hickman port is enough for them to get her stem cells back to her along with any chemo. Having only one side of her chest with a dangling tube, will be much more comfortable for her. She has been aware of the pheresis port every night as she sleeps and it bothers her way more than the hickman does.

I spent one of the most restful 14 hours I have had for over 6 months. I left around 6PM last night and went to Debbie's after visiting Giant for groceries. Had a sandwich for supper made with a great fresh bun from Giant and other fridge stuff. Watched (gazed at) TV for 2 hours or so and then went to bed and read a book until 9:30. Debbie got home and I heard her go straight to bed, so I turned off the lights and got to sleep. Woke around 7 and had a breakfast and coffee. No dressing changes, no port flushes with the flush having to be taken out of the fridge 30 minutes before, no Glad Press n Seal to cover dressings before her shower. Nothing but get myself ready. Almost forgot what that was like.

Adele & I both will need much strength to get through all off this. Please remember to pray for that strength for us. God has been with us every step of the way and we thank Him for that. He has given us many opportunities to tell others that, and we have at every chance.

As always - Rick

Tuesday, January 13, 2009

Busy room at JH

Adele has been here less than 6 hours and the nurses and doctors have spent at least half of that time in the room, talking with her, probing her, checking her meds that she does take, etc.

Chemo is starting as I type this. Anti Nausea meds first and then Busulfin for the first round, 4 days of that with Cytoxan coming after that for four more days.

We are at Day "minus 8" on her calendar. Day 0 is when she receives her stem cell transplant or next Wednesday, and within a week or so of that (Day 8-14 - end of January) is when she will start feeling better and can possibly have visitors in the room. As it is, I am washing hands a lot and using a mask at all times when I am in the room with her, or in the patient area.

I am going back to Debbie's and supper, as meds and blood draws will go on constantly from now until 11 PM, and I need to get some dinner and then be back here by 11 AM tomorrow.

Pray for courage for both Adele and I, as we go through this period.

Rick

We Are IN !!!

Finally Adele is into a room at John Hopkins and will start everything today! Whoopie! Yahoo! We both are very excited, but the FUD factor has a bit of a hold also. FUD (Fear, Uncertainty & Doubt). Adele and I had a good talk about that last night and how we are ready to do this and God is fighting the big battles. We are just here to accept what happens and should not be concerned over too much. God will be with us as we go through this fight. He is always with us and we will win the war.

The room is nice - big but a bit sterile. Adele is unpacking - running out of space for almost everything. Hanging space is limited to about 5 - 8 items, so she is making do with what she has.

We are in unit 5B Room is 5B-03 - her cell phone works in the room, but PLEASE limit all calls, as she will not be feeling very good for the first 2 weeks or so. Chemo starts today, they already let her know - no drink or food after 3PM until 7 PM - causes tests to go awry.

More tonight while we watch the DVD on this notebook. They will fix the TV connections and get her TV activated when we call them.

Thanks - Rick

Sunday, January 11, 2009

Liver Numbers are Good!

OK - the liver numbers have continued to decline and are OK for admittance on Tuesday. She is getting a nasal wash and then we can leave for Debbie's and a relaxing Sunday afternoon.

The probability of Monday rest is high - not sure yet.. If we are in IPOP on Monday I will post new info then, otherwise Tuesday is the next post.

Rick

Back to JH

We arrived back at John Hopkins around 10:40 AM and Adele is now having her blood drawn for the blood tests needed. IF - the blood is good today, she will be admitted on Tuesday around noon and be an in-patient for about 4 weeks.

More later when we find out what the tests show.

Rick

Thursday, January 8, 2009

Still at Home - Eating real food again

We got home on Tuesday and are enjoying being in Ephrata again. Our own bed, wonderful meals home cooked (by others - such great friends) and our own family room to relax and cuddle. There is nothing like it in the world. We have been able to keep in touch with family (thanks to cell phones) and are so happy they are all doing so well. Now that the kids each have new, faster computers, we expect to see and hear from them via web cam more often. Yes, that is a big hint to the one that is already equipped with one!

Adele and I are acutely aware of the limited time we have to sleep together, cuddle on the sofa and other quiet moments we spend together. She is basically house bound and not able to get out because of infection possibilities. If you stop over - the grill at the door is as follows: Have you or someone in your immediate household been sick in the past week? Have you recently cuddled or petted an animal? Have you washed your hands recently - No? Have some Purell on us!

We have an 11:30 AM appointment on Sunday with the IPOP clinic and will know more about what is happening then. I know better than trying to plan things out, but she will probably be admitted into JH as a Bone Marrow Transplant inpatient on next Tuesday, the 13th. That will put her on a schedule that is just 1 week later than what she was planned for originally - which would be good.

We will drive to Baltimore Sunday morning, the weather looks OK then, and go directly to the hospital. After that appointment, we will go to Debbie's and base our stay there. If she does get admitted, I will stay at Debbie's on & off until further notice. My hope is to not get Debbie too bored of me. I should have some time to throw things into a crock pot and help with meals at her house. With crock pot meals, she can get home anytime and have a meal.

More later this week - Rick

Tuesday, January 6, 2009

The Trek Between Baltimore & Ephrata

OK, I am not doing a good job today, it has been a very tiring day. The blood tests came and showed the liver numbers were still too high to start chemo again. Adele was worried, but the RN Sara, let her know that this is not an abnormal result with what she is going through. She advised Adele to let the liver rest for a week and with everyone's approval (all the doctors, Head Nurse, Charge Nurse, Nurse Practitioner RN etc) the next step will be more blood work on Sunday the 11th at 11:30 AM.

We then drove back to Pasadena, MD and Debbie's to get the supplies we left there. Once packed (all of a 1/2 hour to do that) we drove to Ephrata and home. Back by noon and the car was unpacked by 12:30 then right into lunch and off to the races for me.

Wow, we can go home again! - OK We got home hours ago, and having had a wearing day, have gotten as much rest as possible. I got a chance to get to the foot doctor about getting rid of the boot (not yet-wait 2 more weeks), to the pharmacy (some wrong medicine picked up (will exchange tomorrow), to the PA Breast Cancer Coalition offices to drop software that has been in my office for weeks and a few other chores I had. In other words I did not rest until after completing these. I did try to beat the weather, since we knew that there was sleet and wet snow forecast this afternoon.

Supper is done and now the rest and relaxation begins for me also. We will watch a movie and a few Jay Leno's from the DVR. Thank you all for being such supporting people. We do not plan on traveling to Baltimore until Sunday and get to sleep in our own bed for the first time since Dec 26th. How much more restful can we get?

Thanks to all - Rick

Back at JH for tests

Well here we are back at IPOP in John Hopkins.

Made it to Debbie's last night at 10 PM and after a quick unpack of my stuff - Adele is packed and ready for her inpatient stay - we were in bed by 10:30. Up at 5:30 for me - 6 for Adele and a quick breakfast and bathroom stops, and we were off to JH. Came right through downtown at 7:25 and had no problems at all. It is raining a bit, but not much, enough to make us turn on the wipers.

I will add more to this post when results are in.

Rick

Monday, January 5, 2009

Here we go again

OK - We were told to go home by the IPOP nurses this morning. So at 11:30 we checked out of the apartments and traveled home. At 1:30 we were home and starting to unpack, but sleep for Adele ruined that adventure. At least the car was unpacked!

Now at 4:30 or so we were called by John Hopkins again and asked to be there for an 8 AM blood diagnostics test - so we are going back tonight and staying at Debbie's house. Since the snow and sleet tomorrow is to be a problem, I want to get there tonight. I would rather have a morning drive of 35 min in sleet, than 1 1/2 hours in sleet any day.

Adele could possibly still be admitted Tuesday or Wednesday and not get out of sequence for the transplant.

Whoo Hooo Here We Go Again!!!

Rick

We are Home!

Adele & I went to IPOP this morning to get the blood tests done. Her liver counts are all going down (the correct direction) but are still too high for JH to admit her into the inpatient portion of the BMT. So we came home for a few days, and will wait to see what JH wants us to do.

We probably will go down Thursday or Friday to get new blood tests done and see when they will take her in at that time.

Thanks for all the prayers, they are working - Rick

IPOP yet again

Here we are in IPOP again to check the blood and see if the liver numbers have fallen yet.

We are packed and ready to go either way.
If the numbers are lower - Adele might be admitted tomorrow, having us stay at the apartment for 1 more day.
If the numbers are the same or higher, Adele & I will be sent home to Ephrata to wait a few days.

Bags are ready either way, allowing us to check out by 11 AM if we need to.

Numbers and decision later.

Rick

Sunday, January 4, 2009

Another day of waiting and rest

Today we are finally up and about. Adele was naughty and slept until 10 AM, or should I say stayed in the bed dozing on and off?

We had planned to get out and run around to a mall and possibly Debbie's but Adele still needs rest - so we will stay here and hunker down for the day. Cold and wet is the forecast for the day so we will watch football - Ravens of course (while in Baltimore, do as a good Baltimorian would do) and have another lazy day.

Tomorrow is the test - to see if the liver #s have come down and Adele is ready. We see positives either way the tests come out, so are not afraid or worried about either direction taken. Adele is homesick so a few days at home would be nice, while a good result would also be nice as then the process can start immediately. We will leave the path up to God, and abide by His path.

Thank You Lord for all You have done already. We are grateful.

As always - Rick

Saturday, January 3, 2009

A few more days?

OK, latest news is that the liver numbers for Adele are still a bit elevated and the doctor wants to see her blood diagnostics on Monday morning. Since we had already decided to stay through Sunday, we decided to stay on here in Baltimore. Easy decision as Adele is very tired.

We got back from the IPOP around 10:30 and I dropped her in the apartment, where she almost immediately went to bed and fell asleep. I went to the grocery to fill in some blank spots, and returned around noon. She is sleeping as I type, not ready for lunch nor will I wake her to eat.

Now, should the liver numbers still be elevated, they could delay the stem cell transplant, but so far not cancel it. Everything is done to prepare for the transplant, so now we wait to see what the numbers say. The doctor was saying, if they are the same Monday, they could possibly delay 4 - 6 days, and that it would not cause a problem other than stretching out the time it will take, IE adding 4 - 6 days more. We are looking forward to having the transplant, and have been told (although I have learned not to bet on these numbers) that she will be an in patient for 4 weeks and 10 - 14 days after as an out patient. That puts us at mid February for completion, but maybe end of February.

Now we wait this weekend and recoup some of the strength she needs.

Later - Rick

Another day - Another count - Last Count??

Adele is absolutely exhausted today. With her body drained of most of her small amount of energy yesterday and a poor night of sleep, she is drained and now laying down in IPOP. She took sleeping pills, but they did not work very well. I was up at 4 AM and not able to get back to sleep either (she was making the bed move way too much). This morning we got to the 7:30 IPOP appointment and find we might need to be here for another day or so? We decided last night (over a very strong argument from me - I want to go home!) that it would be best to delay going home and get a day of rest here. But now we might be held back by liver counts anyway. They (the liver counts) still were high yesterday, and if they continue that way, IPOP might want us to stay longer.

Rambling on - trying to put a positive spin on this - just too tired to think straight. Will need to get home sometime - just will not be today.

Pray for strength and ability to get the much needed rest. As always include praise and thanksgiving to God for allowing us to get this treatment and all the ways He has helped us to get to this point. I know He has been with us every step of the way. Thank You for all You have provided Lord! We Love You!

As always - more later when counts are in and after sleep has rested us more.

Rick

Friday, January 2, 2009

God is Great!

Today was a textbook case of everything that could go right. Your prayers have been heard and answered!

Adele was on the pheresis (note the correct spelling) machine for 6 hours and did great. We just got back from the IPOP. She did have enough stem cells harvested - 10,000,000 minimum! Her platelets were also good enough that she did not need to get any more platelets transfused, or we would have been another 1 1/2 hour before we could get back.

Tomorrow is another IPOP (Last one?) visit at 7:30 AM and possibly home by sometime around 1 PM. We will need to wait for the decision tomorrow, but it should be OK to go home, except in a case of bad counts. The blood will be drawn and checked there first thing, and by 10 AM we should be packing our bags.. I plan on packing before they tell us that we can leave. I know God is with us and we will be in our own home tomorrow evening!

Thanks to everyone for the prayers - Rick (honestly, a tearful, joyful Rick)

Peresis is Started!!!

This morning at IPOP the white counts shot up over 3000 more and after a long wait we were told that peresis would be started. Go get some food and be back in 45 minutes - that was our directions at 10:30.. Came back to the apartment, fed Adele Chili, yogurt and a roll. Got her back in time and then at noon they started the peresis machine going.

She will be hooked up to it until around 6:30 PM - Pray that all the stem cells needed can be harvested today!

She will need platelets again after peresis, so she will probably be there until 8 PM or so. Pray for strength of body and soul during this time!

I am registering her at 2 PM - but doing wash, eating lunch and blogging until 1 or so, when I need to get back to her and make sure she is OK... We might be able to leave tomorrow, but might elect to stay over until Sunday AM before going back to Ephrata and home. Admission was tentatively scheduled for Tuesday - might need to be put off a few days, or not - the doctors are in charge of those dates..

Thanks - Pray hard - this is an important day - and a long day for us.

Rick

Happy New Year

This morning started much better with Adele looking forward to the IPOP appointment. She is quiet but I think ready for whatever happens. Her blood pressure was low again, so not sure what they will do there. Blood tests being done - just waiting for the results now.

We watched the Baltimore fireworks after dinner. Just laid in bed and we were able to look out of the windows and see them over the harbor. They were a bit more south of us than I expected, but we did have a good view of them.

I came back to the apartment this morning, started a load of wash, worked on a puzzle a bit and started the daily entry in the blog. More later on what happens today.

Rick

Thursday, January 1, 2009

New Year's Day

Wow - what a day and it is only 1:30.. IPOP at 7:30 until 10 AM, then Jim & Shirley were here with supplies and a much needed visit from the "outside world". Then a discussion of fears, real and perceived.

Adele's counts are climbing! White cell count is way over doubled from yesterday (880 vs 380) while the packed cell volume (red cells) is even at 30.5 and the platelet count is 50 up from 21 yesterday. She did have 2 bags of platelets yesterday, so that might even out later?

She concentrated though on the elevation in liver counts, and the fact the doctor came to see her about them. 2 of the 3 liver counts have been elevated all along, while the third number has been elevated since Christmas. They are still climbing, though NOT at a level to be too concerned. We are looking at a 156 in one count while the doctor said a 1500 or higher would be very concerning The JH team will continue to monitor these numbers (as they do every day) as a precaution. Of course Adele is very emotional about this, and needs help seeing the "Big Picture" sometimes. That is what I am here for - and to remind her that God is in control.

We continue to thank God for everything He is doing for us, and all the support everyone is providing to us.

Thank You All - Rick