GinnyFaith's Birthday Party

I decided it was time for a doll post.  I've been neglecting this blog and Alphabe-Thursday.  I just don't spend a whole lot of time online anymore.  I always intend to do better, so bare with me.

We had a lot of rainy weather lately and I kept busy playing with my dolls.  I decided it would be GinnyFaith's Birthday.  She invited some friends over and they had hamburgers and hot dogs.

There's always one person that hogs the ketchup!

After lunch they had cake and ice cream.  The girls even helped decorate the cake.

I didn't want you to miss GinnyFaith's cat!

I'll try and do better in the future.  With a little luck I'll get an Alphabe-Thursday post up this week.  Wouldn't you know it's time for the letter "X" which is always a difficult one.

Things just got very hectic and stressful this summer.  Reid lit up on a PET scan and ended up having two biopsies that were both negative.  However, right after that he developed double vision and had to see a neuro-opthomologist.  He already has Horner's Syndrome from the cancer that was in his neck, but this was a different eye condition.  They had to rule out Hodgkin's in his spine and brain by doing a spinal tap.  That was also negative.  It was also determined that it wasn't caused by the radiation he originally received when first diagnosed.  I believe at this point they think it's from the graft vs host disease that he developed after the stem cell transplant.  He had another PET scan yesterday and we're hopeful that this one will be OK, but time will tell.  Meanwhile, he's still taking online courses and remains upbeat.

I'll be back soon...

Life goes on...

I've been wanting to post an update for a while, but I was waiting for some results.

Reid had been having spots in his field of vision and was sent to a Neuro-Opthamologist.  (I didn't even know such a specialty existed.)  Anyway, this doctor suspected the spots were caused by Reid's original cancer pressing against a nerve in his neck.  He wanted him to have a PET scan just to rule out a recurrence of the Hodgkin's in his neck.

There was no Hodgkin's in his neck, but the PET scan did light up in his check area.  That kind of caught us by surprise since all the scans since his last stem cell transplant had been negative.  A needle biopsy was ordered and that came back negative.  However, they thought there might be suspicious cells and suggested a surgical biopsy so they could get a bigger piece.  The needle biopsy only gets a very small amount.  So, two weeks ago Reid had the surgical biopsy where they went in with a scope and got a larger piece.  This one also came back negative for Hodgkin's.  However, now his doctor says they still might not have gotten enough, so they will follow up with another PET scan in two or three months.  The spot that lit up will either be gone or will grow.

Although we're grateful that the biopsies came back negative, we're still concerned.  It's been a stressful month.

Then on Saturday morning Reid told me that he now has double vision when he looks to the right.  He hasn't had the spots though since early July.  We have no idea what's going on, but he left a message with the Neuro-Opthamologist's answering service and they called back and scheduled an appointment for September 8th.  Hopefully, he'll get some answers then.

Meanwhile, he took an online class this summer and is currently enrolled in another one this semester.  He is able to read and type without any trouble, so hopefully he'll be able to keep up with this class.  He hasn't been driving and won't until he sees the doctor on the 8th.

With all of this going on I fell behind with Alphabe-Thursday.  To be honest, I just wasn't in the mood.  Stress will do that to a person, but I'm joining in again this week.  I enjoy doing Ms. Jenny's Alphabe-Thursday and it keeps me blogging at least once a week (most of the time).

Meanwhile, I thought I'd share a few pictures that I took from the 24th floor at MD Anderson Cancer Center.  This floor is the observation floor.  There's nothing else.  It's just a place to relax.

These pictures were taken through a glass window with my cell phone.  The building in the middle is MD Anderson's Mays Clinic.  In the background (from left to right) is The Astrodome, NRG Stadium (where the Houston Texans play), and the Houston Texans Practice Bubble.

In this picture the building to the right is where Reid was an inpatient for both of his stem cell transplants.  One time his room overlooked this helicopter pad and I would watch the helicopters land (while Reid mostly slept).

And here's how Reid entertains himself between appointments.  This was also taken on the 24th floor.  It's pretty quiet up there.  I don't think a lot of people even realize the observation floor is there.  Too bad because they're missing out on quite a view.

Now I'm off to get my Alphabe-Thursday post up!

How The Grinch DIDN'T Spoil Christmas

I took a picture of a Christmas tree in the Cardiac Pulmonary Clinic at MD Anderson Cancer Center this past Wednesday.  Some of the people that work there decorated this tree and made the Grinch.  I wish I could have gotten a picture of the entire tree, but there were a lot of patients in the clinic which made it difficult to stand back and take one.

I know in past years they've had a contest among the different departments.  I don't know if they are this year, but if they are the Grinch would definitely get my vote if I was a judge.  Is this the cutest tree you've ever seen?  I love it, but I'm a real Grinch fan.

This is the year that the Grinch will NOT spoil our Christmas.  Reid had all his tests and scans this week and is cancer free!  On December 21st it will be two years since he received his brother's stem cells in a stem cell transplant.  Two years is a mile stone since usually the tumor will grow back within the first two years.  The doctor said three years will be even better, but two years is very good.

The graft vs host disease has also improved.  He's got a very mild case.   It will still have to be watched closely, so he'll go back in four months.  Meanwhile, we're celebrating the good news!

I was putting up Christmas decorations last week and came across a set of reindeer antlers that I must have bought at one time for the cats.  Murphy happened to be nearby and Reid put the antlers on her head.  Needless to say, she hated it!

Doesn't Reid look healthy?  I call him a miracle.

"E" as in ELATED!

Hard to believe that we're already up to the letter "E" as in ELATED for Alphabe-Thursday.

I have to admit that I was totally unprepared for class this week.  Real life has kept me busy the past two days, but out of all the stress came good news and I'm ELATED.  I hope you don't mind if I share my good news with you.

I looked up the definition for ELATED.  ELATED is an adjective meaning jubilant or overjoyed.  OK, that sorta sounds correct, but then I saw it used in a sentence and that pretty well summed up how I felt.

Examples of ELATED

1. She was elated at the news.

Some of you already know that my son had his second stem cell transplant on December 21, 2012 in his fight against Hodgkin's Lymphoma. The first time he received his own stem cells back, but unfortunately he relapsed for the second time.   This time Reid received his oldest brother's stem cells.  (Note to Keith:  THANK YOU once again!)

He is now at the six month post transplant mark and spent the last two days having all the scans and tests.  The good news is that no Hodgkin's was detected.  We are elated for now, but I'm afraid I will worry for the foreseeable future whenever it's time for scans (every few months).

He now has an underactive thyroid (probably from the radiation he's had in the past) and is on medication, but that will probably give him more energy.  He also might have a sinus infection, so he has an antibiotic too.  He has one type of white blood cell that's elevated which could indicate Graft vs Host disease in a mild form (or a few other things), but won't be treated for now.  It could just mean that Keith's stem cells are attacking any remaining Hodgkin's cells in Reid's body.  That sounds good to us, so we'll go with that one!

Overall, the doctor seemed quite pleased with his progress.  So, bare with my while I'm ELATED at the news.

Now head over to Ms. Jenny's blog to see the list of other Alphabe-Thursday participants.

Stem Cell Transplant Update...

I haven't posted an update on Reid in a while because things have been uneventful.  That's good!  He continues to regain stamina and has learned how to pace himself so he doesn't get too exhausted.  He has had absolutely no complications and no longer takes the anti-rejection medication.

I have a tendency to compare him to Robin Roberts of Good Morning America.  She received her sister's stem cells in a bone marrow transplant which is very similar to a stem cell transplant.  I know she's been hospitalized twice since she was discharged, so I consider Reid very fortunate.  He's had no signs of rejection or infection.

On June 21st it will be six months since he received Keith's stem cells.  It's hard to believe that much time has gone by already.  He will soon begin receiving all his childhood immunizations again.  He had them all after the first stem cell transplant and now they must be repeated again.  He's a real trooper.  The last time they would give him four or five at a time!  I'd be heading for the hills, but needles don't seem to bother him.  I guess he's used to it by now.

In July he will have all the scans again and waiting for results is always a stressful time.  I have to remind myself to live in the moment and not to let my mind rush too far ahead.  That's much easier said than done.

We've been working on a puzzle that Troy gave me for Christmas. (If you remember, we only celebrated Christmas the Saturday before Easter, so it hasn't been sitting on the kitchen table for six months!)  It's a 4-D puzzle of New York City and has really been a lot of fun.  First you put together the Island of Manhattan in the 1700's.

Then you start adding the next level.  That's when you see things like Central Park, Little Italy, China Town, etc.  Here's Reid working on it.  The Island actually becomes a little larger.  I remember hearing that Ellis Island was enlarged when they dug out for the subway system and maybe that's what happened with Manhattan too.  They had to dump all that dirt somewhere.

Next we'll be putting the skyscrapers up and that will be the 4th level.  I'll have to remember to take a picture when we get it done.  It's a great way to get to know the layout of the city.

I caught Reid as he was leaving for the store this morning and asked him to pose for a picture.  Doesn't he look healthy?  He's starting to gain some of the weight back.  I think he lost 30 pounds.

Keith is coming from Austin this weekend.  His birthday is May 31st, but he's coming on June 1st.  It will be good to see "the donor" again!

Moving along...

The days have rushed by and I never got a post written after Reid's last doctor's appointment on April 1st.  That was day +100 and we left the house at 5:30 that morning and didn't get home until 6:30 in the evening.  It was a long and tiring day, but Reid had all his scans and then his doctor's appointment.  The good news is that the scans were clear and no cancer was seen.

I had every intention of taking a picture and then writing this post, but the picture never got taken and too many days have gone by.  I finally decided to go without a picture this time.  Reid looks remarkably well. (You'll have to take my word for it.)  If you saw him you would never believe all that he's been through.  He has had no complications.  They have cut back on the anti-rejection medication to one pill a day.  There's a good chance it will go down to one every other day next week.

He no longer has to be seen by the doctor weekly.  He his now able to go to the MD Anderson clinic in Clear Lake for a blood draw every other week.  On the alternate weeks he still has to go down to the Medical Center so he can be seen by the stem cell doctor.  However, being able to go to the clinic saves a lot of time (and parking money).

He still gets fatigued, but is learning to pace himself.  It frustrates him that he can't help me more, but there are certain things that he just can't do.

I finally got the backyard cleaned up and mowed.  (Reid's not allowed to do any kind of yard work because of the molds.)  I have a lawn service for the front yard and I'm seriously considering having them mow the back too, but I'm kind of particular about the way it's mowed and it doesn't need to be mowed weekly because it's not regular grass.  I've also been working on cleaning out the garage.  I hope to get a bunch of stuff up to Goodwill tomorrow.  I would have done it today, but it's raining like crazy.  (Thank goodness...we need it!)

I would also like to move and have been looking for another house, but really don't care for the type of homes they build here and the small lots.  I look at the listings, but rarely see one that I'd even like to look at.  I would prefer the type of homes they built in Virginia when we lived there, but homes like that are few and far between.  I don't want to keep putting money into this house.  The house across the street has been a mess for years and I don't expect things to get any better soon.  I was recently talking to a neighbor that told me they are considering selling and so is her next door neighbor.

I'd better go.  I told myself that I'd do a little cleaning today since I can't work in the garage because of the rain.  I'm not online much anymore, but will try and do better to keep in touch.

Where do the days go?

It's hard to believe that Reid is already up to day +83 post transplant.  Except for a little bump in the road a week or so ago he's been slowly regaining some stamina and strength.  He does a little more each day, but has to stop often to rest.  He's looking forward to day +100 when some of the restrictions (especially the dietary ones) will be relaxed a little. The doctor seems pleased with his progress.

On April 1st (day +100) he will have a CT scan and a PET scan.  Everything has gone well so far and we're very hopeful that the scans will show no cancer.  We appreciate all your prayers.

Meanwhile, I've been trying to get some things done around here.  I had the slab work done and most of the floor work completed before Reid went into the hospital on December 15th.  However, I put off the plumbing work until I was able to be here full time.  Last week they came for the better part of three days to dig under the house and repair a broken pipe.  The pipe was under the utility room, so at least it was only laundry water that was leaking under the house.  That's why I felt I could wait.  If it had been any other waste water I would have had to make arrangements to have it done while Reid was in the hospital.

Here's a picture of the plumber under the house.  Needless to say, they send a small plumber down there.  This is definitely not a job for a 200 pound plumber!  He was gracious enough to pose for a picture.

He offered to take a picture of the pipe under the house.  Good thing since I certainly wasn't going under there.

After he fixed it they did another pressure test to make sure there were no more leaks.  Then they filled it all in and fixed the concrete sidewalk.

Here's where they piled all the dirt in the driveway.

They got it all back under there and cleaned up the mess.  Things are as good as new now.

Remind me to move before I ever need this kind of work done again.

I still have paint touch ups to do and a few boxes to unpack from when they did the slab work, but I'm slowly making progress.  We've even settled on a date for Christmas.  Yes, we've never had Christmas.  I still have Christmas packages piled in the den.  So, we're going to get together and have our Christmas on the day before Easter.  I'm even going to put up a small Christmas tree.  I haven't decided what we'll have to eat.  Maybe a turkey?  It will all depend on my energy level.

A couple of weeks ago a very special package arrived.  It was a bittersweet moment for me.

Earlier I wrote about my friend Karen dying.  In the last E-mail I received from Karen she told me that she was no longer able to get to the computer.  She used her cell phone to send an E-mail telling me that she wanted me to have her 1954 African American Vogue Ginny.  I cried when I read the E-mail because I knew it meant her life on earth was winding down.  I hadn't expected to lose her so quickly.

Just knowing she was thinking of me at that moment meant so much to me. If her son had decided not to send the doll I would have understood and lived with the wonderful memories of our friendship. That would have been enough.  However, he contacted me and sent the package shortly thereafter.

The 1954 AA Ginny is special because the Vogue Doll Company only made the AA Ginny  in 1953 and 1954.  Karen stumbled upon this doll at The World's Longest Yard Sale around 7 years ago.  We were both so excited when she found her on a table full of the usual yard sale junk.  She was in good condition, but missing her wig.  Karen paid something like $15-$20 for her.  Finding her like that was pretty amazing and a real stroke of luck.

I will treasure her always and the special friendship Karen and I shared.

Karen replaced the wig with a curly caracul one.  She was dressed in the Vogue pink 1952 Carol dress.  I was thrilled because I already had the dress in the orange version.  Isn't she sweet?  I love this special doll!

Thank you Karen.

Never a dull moment...

We've been home a little over a week and things certainly haven't been dull around here.

I had another cat get sick.  I really don't understand what's going on.  Normally our animals are all quite healthy, but while Reid was away Sophie (our dog) and then Roscoe (one of the cats) came down with urinary track infections.  Since we've been home Zoom (our little terror cat) also developed a urinary track infection and she refuses to eat.  That has meant daily trips to the Veterinarian for feedings and fluids.  She's on antibiotics and obviously feeling much better, but she still won't eat.  I'd be a lot more concerned if she wasn't acting quite normal in every other way.  I did see improvement this morning when she licked a little food off my finger, but that's still not really eating.  So, I'll have to take her for more food and fluids a little later.

Meanwhile, my 19 year old cat has personal problems.  Poor Grace is constipated again and will also be seeing the Veterinarian a little later.

Reid continues to do well.  All of his blood work looks very good and I believe the doctor is pleased with his progress so far.  The big problem is the constant fatigue.  He wants to do more, but then does and becomes exhausted.  He no longer needs the weekly IV, so last Wednesday we celebrated by going to Kenny and Ziggy's for lunch after his appointment at MD Anderson.  It was the first time Reid has eaten in a restaurant since before he entered the hospital on December 15th.  In fact, it was his first venture out in public.  We tried to go at a time when Reid wouldn't be exposed to too many people, but that place always seems to get busy!  Kenny and Ziggy's is located in Houston near The Galleria and is a NY Delicatessen type restaurant.  (My kind of place!)  The servings are huge and we got two more meals out of our leftovers!

Did you see 20/20 last Friday with Robin Roberts?  (The link will take you to hulu.com and the 20/20 broadcast.)  If you did, you should have a good idea of what Reid has been through, only he's been through two stem cell transplants within the last two years.  A stem cell transplant and a bone marrow transplant are basically the same thing.

I've been following Robin's progress closely since she's about three months ahead of Reid in her recovery.  Her transplant was on September 20, 2012 and Reid's was on December 21, 2012.  It was really exciting to see her return to Good Morning America.  Her situation and Reid's were so similar.  Both of them were very fortunate to have a sibling that was a match.  I've read that only 25% of patients have a close relative that matches, but I heard Robin say it's 30%.  Regardless, most people aren't as fortunate as them.  Then Robin lost her mother right before her transplant and we lost Jim right before we learned that Reid had relapsed.  So, there are definite similarities.  I'm thrilled to see Robin doing so well.

We did have a few moments of panic this morning when Reid couldn't find his bottle of Tacro which is the anti-rejection medication.  He hadn't needed it in almost a week because he had a pill box full of all his medications.  It was only when he needed to refill the box that he couldn't locate the bottle. He does carry the bottle down to the hospital on appointment days because he can't take a pill until after the blood draw.  No sense in carrying the whole pill box when the bottle of Tacro fits easily in his pocket.  We knew he had it last Wednesday and finally found it in the car.  What a relief since he can't miss a single dose and it would have meant a trip down there today.

Anyway, things are settling down a little and I've been trying to catch up on lost sleep.  It's not unusual for me to indulge in an afternoon nap.  I have a hundred things I should be doing around here, but right now those naps are a luxury that I'm enjoying.

Home, Sweet Home...

Friday morning I loaded the car at Candlewood and we headed to the hospital for Reid's blood draw.  That only took about 30 minutes and then we headed HOME!

Ashley and the rest of the cats remembered Reid.  So did the dog.  Ashley cannot understand why he's no longer allowed in Reid's room, but that's the rule for a while.  Reid is not allowed to sleep with any animals and he has to wash his hands or use hand sanitizer if he touches them.  So, Ashley stood outside his room and cried in protest.

Last night we had hamburgers and Reid topped his with lettuce and tomato.  It's funny how you really end up craving something when you can't have it for a while.  I remember when we lived in Sicily and I longed for American pizza.  It was one of the first things I had when we arrived home.  I guess that's why so many diets fail.  When deprived of something we crave it!

Tonight we had Roast Sticky Chicken.  It's one of our favorites.  I think we were all tired of eating frozen stuff that was zapped in the microwave.  Having real meals is enjoyable for everyone now.  If you've never had Roast Sticky Chicken give it a try.  There are many variations out on the Internet, but we enjoy the version I found on Real Meals For Real People a Yahoo newsletter group.  I'm not sure if you have to sign in to Yahoo to read the recipe, but joining Yahoo is no big deal and worth it for this recipe.  I didn't take a picture, but it tastes as good as it looks and makes the house smell real good for hours while cooking.

Tomorrow Keith heads back to Austin.  We will really miss him around here.  I can't help but think of how proud Jim would have been watching Keith and Troy step up to the plate to help their brother and me.  He would have been standing there smiling as Keith donated stem cells for Reid and then he would have been smiling as Reid received them.  He would have been laughing as we all learned to hook Reid up to an IV with shaky hands and do all the other things required of an "official" caretaker.

I hope as I get caught up around here and things slowly return somewhat to normal (whatever that is) I'll be able to catch up with E-mail and visit more blogs again.  Thank you for your prayers and support the last few months!

Counting down the days...

We are all counting down the days until Reid can move home.  Yes, Friday, February 15th is the big day!

I've started bringing things home from Candlewood.  It's amazing how much stuff we managed to drag down there.  When I go back on Thursday I have to bring the ice chest so we can clear out the refrigerator and freezer Friday morning.  I've been saving grocery bags so I can pack up the leftover groceries, cleaning supplies, and medical supplies.  I'm hoping everything will fit in the back of the Escape along with out clothes.

We no longer have to hook Reid up to the IV's.  He'll only be going to the hospital on Wednesdays now for a blood draw, doctor's appointment, and a three hour infusion.  He's drinking and taking enough magnesium orally now.  I'm not exactly sure why he needs the magnesium, but I know it has something to do with the anti-rejection medication he takes.

He's still very fatigued, but he no longer uses a wheelchair at the hospital.  He's able to walk from the parking garage and around the building and that's quite a bit of walking.  He sometimes has to sit and rest, but he makes it.

He's lost 27 pounds and to me looks skinny, but he's pleased with his new weight.  However, I don't think he'd recommend this diet to anyone.  His beard is growing back, but it's growing in white. We're not sure if that's a temporary thing or permanent.

I snapped this picture before I left for home on Monday.  (That's all the stuff I was bringing home piled on the couch beside Reid.)  He's been through a lot, but is still smiling 95% of the time.

I'm working on getting the house spic and span before he gets home.  The dog needs to be bathed and groomed, but the one cat attacks her whenever she's groomed so I can't have it done until we move back home and I'm here 24/7 to protect the poor dog. 

Meanwhile, I'm trying to trap a raccoon with a humane trap, but the raccoon is smarter than me.  He's driven off my one outside cat who is apparently terrified of raccoons.  He quickly eats and then jumps the fence.  I really need to catch this raccoon and relocate him to one of the FEMA lots.  He'll be a lot happier near the creek.  He's a smart one.  He figured out how to get the food without triggering the trap.  I read online to tie a can of cat food to the back of the trap so I'm giving that a try.  I hope one of these nights I can catch him.  I try and bring in the cats' food as soon as they're done so he can't get any, but I'm afraid he's managed to steal some a couple of times recently.  Wish me luck.

Tomorrow I head back down to Candlewood for the last night and then bring Reid home Friday morning.  We're going to have hamburgers this weekend and he asked me to buy lettuce and tomatoes.  The doctor told him that he can now have fresh produce at home, but he still can't have it at a restaurant.  We just have to make sure and wash it very, very well.  (I'm actually going to soak it in bleach and water like we did when we lived overseas.  That's my idea...not the doctor's.)  And the hamburger no longer has to be well done.  It can be medium-well.  Right now that all sounds real good to him!

Time Marches On...

Time marches on and I'm home again until Thursday.

Yesterday was Reid's birthday.  On Saturday Keith brought a cake when he arrived to stay with Reid.  It was a delicious, moist, chocolate cake from The Cake Lady Bakery.  She always has really good cakes and we all enjoyed this tasty treat.

Yesterday when Troy arrived we ordered lunch from The Olive Garden and brought it back to Candlewood.  It was a nice change from the frozen meals we zap in the microwave.  We couldn't take Reid out for lunch for his birthday, but we did the next best thing.  Why didn't I remember to take a picture???

On Friday Reid had his regular appointment and saw the stem cell doctor.  The doctor seemed really pleased with the progress Reid has made.  He told him that his brother's stem cells are reproducing and his blood work looks really good.  In fact, his platelets are back to normal which is unusual at this point.  The PET scan that was done last Tuesday showed no cancer.  So, it was good news all around.  Reid can move home on February 15th as long as there are no changes in his condition.  We are all ready for him to move home and have things sort of back to normal again!

Reid has been playing lots of games with his brothers.  It helps pass the time.

I know the room looks full.  It's going to take us a while to pack everything up when it's time to move back home.

This end of the counter holds some of the medical supplies.  We've got more stashed in the closet.  We'll be glad when it's time to pack this all away...for good!

Doesn't everyone have an IV bag on the kitchen counter?

I try and take lots of pictures of Ashley...Reid's cat.  Reid wonders if he'll remember him.  I think he will.  He might be a little skittish at first since he was feral and usually dives under the couch when someone comes in the door.  Once he realizes who it is he'll be OK.

I was hoping to have the attic duct work replaced while Reid was gone.  Jim and I made temporary repairs to one spot a couple of years ago.  Then we decided to wait until we had the house leveled before replacing the duct work so nothing would be out of kilter.  I checked with Reid's doctor and was told we shouldn't have the work done for at least six months since it will put molds in the air.  So, that will have to be put off again for a while.  I still need to have the rest of the new floors put down when we move back home.  They weren't able to finish before Reid went into the hospital.  There's just so much that needs to be done around here now.  I've been thinking about moving, but just haven't gotten past the thinking stage.  Too much going on at once!

Thanks again for your warm thoughts and prayers.

More changes...

I'm home right now and thought I'd quickly post an update while I'm on my regular computer.  Typing things on my little Netbook at Candlewood seems to take me a lot longer, so I thought I'd take advantage of having access to my regular computer and post an update.

Reid is doing much better.  In fact, I came home for a couple of days and when I went back I could see a difference.  He's still very fatigued, but he's spending a good part of the day sitting up.  His appetite has also improved.  It's far from being back to normal, but he usually eats at least one half way decent meal a day.  And the shortness of breath is practically gone.  He coughs a lot less now.  I'm a little paranoid about all the flu this year, but he's not out in public and wears a mask when he goes to the hospital.  We've all had flu shots so hopefully no one will get sick.  I keep the hand sanitizer people in business!

Reid's got a ziplock bag full of medication.  I told him it reminded me of my father but about half of it is just medication he takes as needed.  Daily he takes the anti-rejection medication, anti-fungal, anti-viral, and probably one or two other things that I can't remember right now.  It's the anti-rejection medication that requires a daily three hour infusion to flush his kidneys.  We were going daily to the hospital, but they decided the infusion could now be done outside the hospital.  His blood work has stabilized and he will now only go two days a week to the hospital for a blood draw.  While he's there they'll give him the infusion.  He'll also see the stem cell doctor once a week during the infusion.
 
Meanwhile, we were given a pump and instructed on how to hook him up for the daily infusion.  I don't mind telling you that I find it a little nerve wracking, but hopefully in time it's won't be as difficult.  The nurses at the hospital all make it look so easy, but I feel like I'm all thumbs.  I'll be going back to Candlewood in a little while, but Keith will be starting the infusion this morning.  We're all doing it now, but Reid also knows how it's done and can prompt us when we have trouble.  We've got printed instructions to follow too.

I'll be staying tonight and then Troy will be arriving Monday morning to relieve me until Wednesday.  Meanwhile, Keith will be staying at the house taking care of the menagerie and returning to Candlewood to relieve me on Saturday.  Did you follow all of that?  Anyway, we do have everything covered so that Reid has someone with him 24/7 as required.

I was able to extend our stay at Candlewood until February 15th which is only five days short of the 60 days post transplant we're supposed to live down there.  The Houston Rodeo is cutting our stay short those five days, but I'm hoping the doctor will say it's OK to move back home at that time.

Thanks again for your support and prayers.

A little excitement...

Early Sunday morning (4 AM) Reid started coughing and couldn't catch his breath.  It went on for about ten minutes.  He told me he was dizzy and couldn't breath.  He could barely talk.  Finally, I asked if I should call 911 and he said yes.

The ambulance arrived in less than five minutes, but by then he was breathing much better.  They put him on oxygen and brought him to the ER. I got dressed and followed a few minutes later.  Fortunately, there aren't many cars on the road then and of course, I made a wrong turn and got lost.  However, I found my way and arrived at the hospital a short time later.

They decided once again that he does not need oxygen at home.  The saturation rate is good.  He only has trouble when he has a coughing fit.  So, after six hours in the ER we left so he could keep his appointment upstairs for the three hour infusion that he needs each day.  He is very fatigued, but he was after the last stem cell transplant too.  It takes a long time for the energy level to get back up again.  I've been using the valet parking at the hospital so that I can get him right in a wheelchair.  He can walk, but everything is pretty spread out at the hospital and he can't do that much walking.  So, we grab a wheelchair at the front door.

Last night went very well.  He didn't have a coughing fit, but he's learned to walk slowly and not jump up fast.  It's when he takes deep breaths that he starts coughing.  I think he also panics a little when he can't catch his breath which causes him to breathe faster and just makes things worse.

Today Troy came to stay with him and I came home.  I will go back down on Thursday and stay until Troy returns on Monday.  And Keith arrives tomorrow.  So, I have reinforcements now!  That is a big relief.  I hadn't been able to leave Reid to go to the grocery store.  Candlewood has a small pantry and I was able to buy a few things there, but before I left for home I went grocery shopping so Reid and Troy would have plenty to eat.  The little kitchenette only has a microwave and a two burner stove top, but it's sufficient and I loaded up on TV dinners and assorted junk food that I thought might appeal to Reid. He is able to eat now and hold things down, but he doesn't have a big appetite.

We were teasing Troy about this being his big test.  When Reid was little we went out one day and left him with Keith and Troy.  They were in high school at the time and got busy playing a video game.  Reid had gone roller skating with a friend, but fell and broke his arm.  He told us later that he heard it break.  Anyway, he came home and told his brothers that he had broken his arm.  It was a clean break and not visible, and they didn't believe him.  In fact, they told him to quit crying and to leave them alone.  So, he got some ice from the freezer and put it on his arm.  When we arrived home he told us that he had broken his arm and "Keith and Troy don't even care."  It's one of those family stories that we like to retell from time to time.  Reid and I are confident that Troy will do a much better job this time.

I better get back to vacuuming.  I'm trying to get the house in order before Keith arrives tomorrow.  I wasn't getting much done at all in the evenings when I got home from the hospital and the place is a mess.  I'm also looking forward to sleeping in my own bed.  If the cats allow I'll sleep a little later.

Lots Going On...

Reid's white count continued to go up and took a big jump overnight on Tuesday.  The doctor said he could be discharged on Friday.  This welcomed news took us all by surprise.  Keith wasn't returning from Austin to help me out until the 9th.  I couldn't make hotel reservations until I had an actual date and I thought there would be more notice.

Just my luck the hotel across the street had no rooms available.  I think a lot of people put off traveling to MD Anderson until after the holidays and made reservations to come after the first of the year.  I really wanted to stay close to the hospital this time, but had no choice but to quickly come up with a plan B.  I was very pleased with the place we stayed at last time, but it's a little bit farther away.  I called them anyway and was able to get in for at least 30 days.  The Houston Rodeo starts the beginning of February so we might have to leave then.  I'll cross that bridge when I come to it.  The doctor had said he'd need to be close by for 60 days after transplant, but I'm kind of hoping that might change and we can go home sooner.

Reid was pleased to be getting discharged and then on Thursday had a nose bleed that wouldn't quit.  That's not unusual with low platelets and it finally had to be cauterized.  Then he continued to have shortness of breath and was seen by a pulmonary doctor to see if he'd need oxygen at discharge.  Of course, this now had the Friday discharge date a little up in the air.  However, on Friday they finally determined that he wouldn't require oxygen outside the hospital and said he could go.  We left the hospital around 6:00 PM.  He still has trouble catching his breath when he coughs, but his lungs have developed some scar tissue from all the radiation he had a few years ago. 

He now has to return to the hospital every day for blood work and infusions for at least the next two weeks.  This all takes around five hours, but he's still glad just to be out of that hospital room he called home for three weeks.  He's lost weight and is very fatigued, but is starting to eat a little now.

Troy has offered to come to Candlewood and stay with Reid from Monday through Thursday so I can have a little break.  He's able to work remotely with his laptop and take Reid over to the hospital each day.  I also think Reid will enjoy having someone else around.  Troy got sick and had to stay away from the hospital after the first week and Keith had to return to Austin on the 30th, so it's just been me lately.  I have some things I need to get done at home too. By the time I returned home from the hospital in the evenings I was kind of worn out and not much got done.  Keith is coming back on Tuesday, so I'll have even more help and will finally be getting a little rest.

I'll try and post updates as time allows.  Thank you for your support and prayers.  Betty

Saturday Update

Today is my birthday so Keith took me to breakfast at the Rotary House Hotel which is across the street from MD Anderson.  In fact, the hotel is owned by MD Anderson and managed by Marriott.  They have a breakfast buffet and I probably won't eat much the rest of the day. 

Reid seemed a little better today.  When we arrived he had already eaten some oatmeal which was an improvement.  For days he's eaten nothing but applesauce and pears!  He just hasn't had an appetite and has lost ten pounds in the last two weeks.

Today his white count went up a little and hopefully that's a trend we'll continue to see.  He sure would love to make that January 10th discharge date.

After we arrived he needed oxygen again for shortness of breath.  The doctors don't seem overly concerned and he had a CT scan yesterday which didn't show anything of concern.  It seems as if I have to do all the worrying around here.  :)

I better sign off now.  I told Reid I'd go get him a coke downstairs.  He's playing a game with Keith and the nurse is giving him Benadryl before a platelet transfusion.  He needs some caffeine to stay awake.

Christmas 2012

The recipient and the donor playing Pandemic on Christmas Day.  Taken with my phone since I didn't have the camera with me.  

We have to wear masks and gloves when we're with Reid.  (Try texting with gloves...it isn't easy.)  When he leaves the room he has to wear them.

The Latest...

Yesterday was not a good day for Reid.  He was miserable all day with the expected side effects.  It was the first day he didn't get out of bed and walk.  They like them to walk around the unit three times a day, but he was just too sick to leave the room.  The stem cell doctor had told him that he'd be sick around a week after entering the hospital and he certainly knew what he was talking about.

This morning didn't seem to start out any better.  In fact, when we arrived he was on oxygen, but they said his vitals were fine.  He was put on oxygen because when he would take a deep breath he would cough and then get sick.  The oxygen and a breathing treatment really helped.  He was also given a platelet transfusion and by late this afternoon he had really perked up.  In fact, he and Keith sat and played a game for a while which was really good because Reid needed to get out of bed and sit up for his lungs.  He also took a short walk around the unit.  The doctor said he needed to walk and sit so his lungs would expand.  It was good to see him finally feeling a little bit better.

Tomorrow they're having a pole parade.  They asked people to decorate their IV poles for Christmas and parade around the unit at 1:00, but Reid has decided to pass on that one.  (That's definitely not his idea of fun.)  We've decided we'll celebrate Christmas after he's discharged and feeling a little better.  Keith and I will go downstairs for the Christmas dinner they have for patients (who are able to attend) and caregivers.  Reid won't be able to go, but he really hasn't been eating much the last few days anyway.  The fatigue is really bad and he sleeps a lot.  He also complains about them waking him up all the time.  If they aren't taking vitals his IV pole is beeping.  Although he understands the necessity of it all...he'd sure love some uninterrupted sleep.

I did decorate Reid's room for Christmas, but forgot to take pictures.  It's mostly decorated in Dollar Tree  merchandise, but staff members that come into the room often comment.  I also added some lights and the little Christmas tree my sister sent.

The staff on Reid's floor won the Christmas tree contest.  I thought it was really cute and original.  It's a regular tree covered with net type material that's all bunched up.  It looks like Santa and must have taken a long time to do.

And every year we look for the gingerbread village.  I believe it's the Houston Racquet Club that donates it to the hospital and it's set up in the lobby.

My photos don't do it justice.  It's really huge and I've only taken pictures of a small portion of it.  It's hard to take pictures because there are usually people standing around looking at it.

I apologize for not answering E-mails or returning phone calls.  I haven't even been taking my Netbook to the hospital because of the difficulty connecting to their Wi-Fi.  With Keith here this week we're staying later at the hospital and there always seems to be so much too do when we get home.  We walk in the door to a chorus of meows from hungry cats and a dog that needs to get right out.

Thank you for your prayers and support.