Improving

Things are better today. Ray's eating better and resting a little easier. We even made it out for a short walk down the hall. He's on four different antibiotics and of course still on I.V fluids. We're all being very careful with the hand washing and other precautions, as his blood counts are about as low as they can get. We pray for steady improvements each day, and thank the Lord for progress being made.

Love you all,
Kim

Out of ICU

He 's now out of ICU and back in a regular room, however still being closely monitored. Last night he was given two more transfusions--one unit of platelets and one of packed red blood cells. He's really weak, and getting out of bed very little. He's having trouble sleeping, probably due to meds he's taking. The blood pressure readings are back in the normal range, making it a little easier for the rest of us to get some sleep anyway.

I think we're finished with all the Christmas parties and gift exchanges. Santa was way too good to all of us. Once again we realize how we're so blessed with family and friends. We thank God for each of you.

Love you all,
Kim

Back In

Ray had to be admitted into he hospital Thursday morning (Dec. 24) after a fainting spell that took us all by surprise. He had been doing so well--we were gearing up for Christmas, but quickly our plans were changed. He received a unit of blood, and soon was ready to go back home, claiming we'd made a big mistake by going to the hospital.

Yesterday, (a different story) was really a rough day for him. High temp (103.1) plagued him for several hours. After putting the I.V. tubing in ice, and cooling him off with wet washcloths, and of course an assortment of drugs were administered, by late afternoon the temp was finally manageable. Now low blood pressure (due to dehydration) is the problem. Around 10:00 last night he had to be moved to ICU. I had already gone home for the evening, but Jenna was here with him.

It's a balancing act with the meds, temp, fluids, etc., etc. I learned too many fluids, given too quickly presents even greater problems. I just left his ICU room (first visiting time 6:00-6:30 a.m.) , and he was resting well. The nurse said he'd had a "good night, requiring little support." I talked to Ray just a couple minutes, he said he just wanted to sleep. What do you think my chances are for getting to talk to the Dr. today--Christmas weekend? We'll just keep fighting the battle. Thank you for all your prayers.

Love you all,
Kim

Merry Christmas to All

We still have Ray at home other than daily visits to the Dr. and then on to the hospital (outpatient) for his injection. We continually praise God for his good health. Our daily trips are totally exhausting for him. Hard to believe, but each day it takes about 4 hours just to get this done. So by the time we finish, he's begging for the recliner or bed. Today it took a little longer because he also had to have a unit of platelets at the hospital. His white blood cell count is nearly wiped out, meaning his immune system is also wiped out. We're being very, very careful while we're out, and looks as though his only outings over the holidays will be the daily trips to the Dr. and hospital.

Merry Christmas! We love you all!!
Ray, Kim and Family

Home This Evening

We were pleasantly surprised this morning as the Dr. was making rounds and made mention of the possibility of Ray going home for a few days. As it turns out, he was dismissed from the hospital around 7:30 this evening since his blood counts are still at a fair level. Counts are not great, therefore he will be going into the Dr. each day for blood tests and then on to the hospital (outpatient room) for an injection. He finished the first seven days of chemo infusions this morning, so he can now continue the regimen as an outpatient. Feeling fatigued is his only complaint right now.

We were assured that he will be returning to the hospital (probably within a week) and we're on high alert to watch for fever, bleeding and many other wicked side effects. We're just so happy to get to have him home for a little while. It does ALL of us a world of good!

I'm still tyring to finish up Christmas shopping, (Christmas cards?--maybe next year) and have decided to wait until after Christmas to wrap up the last few details of wedding preparations. Thank heavens we're just the parents of the groom.

Jenna made it home last Friday--so each day as I'm hyperventilating, I send her out with a list of "things to do." Really it's O.K. if it doesn't all get done, just having family together is the greatest gift of all.

Thank you for all your concern and prayers which continues to be our source of strength.
Love you all,
Kim

Christmas Carolers

Ray was surprised by some "Christmas Carolers" that happened by his room this evening. There were others on the floor who were also surprised to see so many Sisters filing into his room. What a treat! Thanks Sisters & Terri (we begged her to take off that burnt orange) for the visit. Please do it again real soon.

Ray is wondering how he will ever be able to stand the boredom for the next month. He feels good now, but has been promised that will change in a few days. He loves to have visitors and phone calls, and of course has his cell phone close by. He's got a stack of books there also, but finds it hard to concentrate.

Daniel and Mary love to go visit him, but after a very short while we're ready to throw 'em out of the room. Those walls start closing in really fast. Christmas break begins Friday. Surely not!

Love you all,

Kim

Next Challenge

Ray has been admitted to the hospital to begin what may prove to be his biggest challenge yet. Each round means approx. 30 days in the hospital and he'll have at least two rounds. This regimen of chemo is what the Amarillo Dr. and the NIH Dr. after consultation are prescribing. He will have a break at home between cycles. The Docs feel that in order to gain remission for a third time, the leukemia is going to have to be hit quickly and hard. His blood counts today, showed he's lost ground just since his last tests which were done Thurs. at NIH in Maryland. Plenty of warning has been given to us about the difficulty of this treatment.

It's been a rough day. We can't help thinking of the upcoming holidays and Andy & Britteny's wedding that Ray will have to miss. We also know that one day this will all be behind us and we'll have many holidays and anniversaries to celebrate.

Love you all,
Kim

Back in the Groove

We're getting back into the groove of things. The kids are are back in school, the laundry is done, and we waded through all the mail. We found out this morning, Ray's appt. will be tomorrow morning at 8:00. We're anxious to hear the plan.

Happy 26th, Andy!
More later,
Kim

No-So-Good News

The results are in. The leukemia is no longer in remission so a transplant is not possible at this time. I've mentioned before about how the severity of the leukemia is measured in percentage blasts--well Ray's blast count is at 50% and it needs to be 10% or less. The strategy is still the same, as far as when the blast count is lower, we can plan on a transplant then. We'll be heading back to Amarillo tomorrow and plan to see the Dr. there ASAP.

I think the transplant Dr. here in MD is just as disappointed as we are. He did say the best place for Ray is in Amarillo for the chemo. He also said if there were a regimen/potion here that we knew for sure would do the job, he'd start him here. But since there is none, the two Drs. will put their heads together once more and go to work putting together the best plan.

Obviously, we're very disappointed. However, we've done this before and feel confident it can be done again. Thank you for all your prayers and support. Please continue to pray for Ray, especially. I do wonder at times, just how much can he take?

Love you all,
Kim

In DC Today

We made it down to DC today and had a great day! We left our hotel around 9:00 this morning and didn't get back until 6:00 this evening. We saw so many fascinating sites, and still only saw a small fraction of what we wanted to see. We tried to do things that didn't require too much walking for Ray's benefit, but we still did so much walking--but we're not complaining. The weather was nice, temps in the mid 50's, mostly sunny. We did quite a bit of hopping on and off the Metro and also a trolley. We're feeling like seasoned tourists now. Can't wait for our kids to visit DC.

Getting away from the hospital and hotel was a good break. In the morning, back to the real reason we're here.
God's blessing on everyone!
Love you all,
Kim

Testing is Done

Ray had two procedures this morning that's got him horizontal this afternoon. Within a two hour span he had a bone marrow biopsy and a lumbar puncture. He said the lumbar puncture (the first one for him) wasn't too bad. The biopsy one the other hand was a different story. He's such a trooper, and takes it all so well. Just watching him endure all this, at times has me in tears. I know I would not be a good patient. He is a very patient patient. As far as we know now, he has no appts. tomorrow. They give an extra day in case more tests need to be done or redone. Thursday is the big day we get all the results. Needless to say, we're quite anxious to find out the plan. Right now we don't even know what we'll be doing Friday. Our return flight is scheduled for Friday, but of course we may be changing that.

We've heard often this past week, mostly from other patients about what a great facility NIH is. I talked at length this morning to a lady from Missouri whose husband had a transplant 3 months ago. She had so much good advice especially for a place to stay long term. She also has young kids at home with Grandma. It's awesome the way God puts these people in our lives just when we need them most. Yesterday we had a great visit with a Lebonese Jesuit priest, chaplain at NIH. He was so encouraging to Ray, telling him not to fear the future and to never dwell on the dark side of the cross he's carrying. Just before we left the hospital today, we ran into a lady chaplain that was so eager to help with anything we needed.

If Ray's up to it in the morning, we plan to head to D.C. and take in some tours. We've been so busy with appts./screening that we haven't been out much, only a couple of short trips to downtown Bethesda. Had a great visit with Doug yesterday afternoon, just wasn't nearly long enough. Thanks, Doug for taking the time to come by. It was great to see you here.

Never take your good health or your kids' good health for granted!
Love you all,
Kim

A Beautiful Snow

We had the most beautiful snowfall yesterday--big flakes that fell straight down. The temp. was in the 40's keeping the roads clear. We have a beautiful view of pine trees outside our hotel room, making a picturesque scene with the fallen snow.

Shelley (Ray's niece, Linda's daughter) made it here around 1:00 yesterday afternoon. We had a great time with her, catching up on this past year. She spent the night with us giving us lots of time to visit and laugh. She had reservations for us last night at a great Italian restaurant. We took advantage of her having a car, and did a little shopping before she left today, Thanks Shelley for braving the snow and making the trip. She's our Goddaughter, and we decided we've done a pretty good job on her, but still needs a little tweaking. :)

My brother Doug (from Denver) called today and he's going to be in this area tomorrow afternoon. So we'll get to see him! Can't wait.

We've talked to Mary and Daniel over the weekend. Sounds like they're not missing us too bad, for which we are most grateful. Thanks, Alan, Chrissy and Willie Faye! Yesterday Daniel rode along with Eric's family to watch Bretts' football game. He was so happy to get to go. Bushland won, what sounded like a most exciting game.

We'll be heading back to NIH in the morning for more tests and appts. for Ray; should finish around 2:30.

Love you all,
Kim

Test, 1.2.3

Really nothing new to report for today, just more testing. The tests done today was a CT scan, an echo, a lung function test and even a visit to the dentist. Things really do move quite fast around here. Ray has spent very little time in waiting rooms. They've always got him doing something. I am left sitting in waiting rooms that are a whirlwind of activity with at least two televisions blaring. I've heard every angle possible on "Tiger's Transgressions" and the "White House Crashers" blah, blah, blah. However, today I found a chapel with Mass everyday and even an Adoration Chapel. We started using the chapel as our meeting place. No appts. for Sat. or Sun.

We're waiting for snow now. It's been warm, so they're saying the snow that is coming won't be a problem for the roads. Not sure what we'll be doing this weekend.

More later,
Kim

Testing, Testing

Many, many tests were done today. Ray was quite surprised with the blood work done very first thing this morning--21 vacutainers of blood were drawn! He first thought it must be some kind of mistake. Chrissy had 17 drawn. They were both kept busy moving from one dept. to another. We returned to the hotel around 5:30 this evening. Chrissy is finished with her screening and will head back to Amarillo early in the morning. Wish she were going to be here longer, but she'll be coming back when it's time for the transplant and be here 7-10 days then. Not exactly sure yet when that will be.

More tests still to be done tomorrow, Mon. & Tues. for Ray. This NIH is an amazing place with so many people, every size, shape and color. People from all over the world and all are here with one goal in mind--healing for themselves or for someone they love. There's definitely a camaraderie among the patients.

Shelley, one of Ray's nieces, lives in Joppa, MD and will be meeting us this weekend. Her husband, Aaron is stationed there, but is currently training in Utah. We're sure looking forward to seeing her. The weather for the weekend is supposed to turn colder and there's a chance of rain and snow. Temps were in the 60's today.

Love you all,
Kim

A New Grandbaby!

We have a new granddaughter!! Ava Maria was born this afternoon @ 1:31, weighs 7# 7 oz. She's beautiful. Ryan sent a pic to Ray's phone shortly after her arrival. I know Heather is relieved to have that baby here. I wanted to talk to her this afternoon, but decided to wait and call her tomorrow.

We were able to get around today and do a few things. This morning was spent at NIH going through the admissions process and becoming familiar with the hospital. This afternoon we decided to hop on the Metro (subway) and spent a couple hours in downtown Bethesda. We are feeling much more confident about being able to get around now. This hotel has a great staff that is more than eager to help answer any questions. This hotel also has a complimentary shuttle that goes to NIH and the Metro every 30 minutes. The driver that brought us to the Metro today, explained every detail for us about buying tickets, and where to get off and where to get back on. I suppose we had a lost look on our faces.

Chrissy made it in this evening. She and Ray have an early start in the morning. I better get to bed.

Love you all,
Kim

We've Arrived

Everything was great today. We could not have asked for anything better. Our flight into BWI even arrived about 25 minutes early, allowing us to catch an earlier shuttle than we expected into Bethesda. We were told to tell all our friends to fly SW Airlines. Ha! I hope all goes the same for Chrissy tomorrow as she makes her trip out here.

The appts. will begin on Thurs, we plan to spend tomorrow getting acclimated and learning our way around, especially NIH (the hospital/campus). We've got so much to learn.

More later,
Kim