Saturday, December 29, 2012

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.

Wednesday, December 26, 2012

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 isn't easy.)  When he leaves the room he has to wear them.

Monday, December 24, 2012

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.

Saturday, December 22, 2012

Day "0"

Yesterday was Day "0" and Reid received Keith's stem cells.

They were brought from the stem cell lab frozen.
Then they were thawed.
Keith's stem cells were divided between three bags.  A bag was hung and when that one was completed the lady thawed the next bag, etc.
Reid wasn't feeling well and it bothered him to see the infusion, so the nurse slipped the IV pole behind the curtain.  The entire process took less than an hour.

Reid is very fatigued now.  He's already fatigued from the chemo and then they had to give him Benadryl and some other drugs before the infusion.  Hopefully today he'll be doing better.

Troy went down this morning to give me some time at home to get a few things done.  I've got to get busy so I can get down there before noon.  Thanks again...

Thursday, December 20, 2012

Quick Update

I'm having trouble connecting to the hospital's Wi-Fi.  Yesterday I tried on and off all day.  Today I finally went down to the first floor and tried a couple of different spots and was finally able to connect.  Then I came back up to the 18th floor and stayed connected, so I guess the trick is just to connect somewhere and then you're on to stay.  Just not convenient.

Reid is very tired, but still no awful mouth and throat sores.  The nausea has been kept under control so far, so that's good news too.  He's having cookies and applesauce for breakfast.  He needs something in his stomach so he can take some meds.  The hospital doesn't have meals at scheduled
times.  Instead they have room service and patients order off a menu and call in their order.  Really a good idea since it's more important for cancer patients to eat what they want when they feel like eating.  The food is delivered by someone dressed like a waiter and usually gets here pretty quickly.

Today is day -1.  Tomorrow Reid receives Keith's stem cells and that is considered day 0.  Then the following days are day +1, +2, etc.

Last night it took me an hour and twenty minutes to get home.  I think traffic is heavier because of Christmas.  I need to leave about ten minutes earlier today because it's getting dark so early and I have no business driving at night with my depth perception problems.  I wish I could stay longer.  If only it was summer with the longer days.

Keith will be coming back for Christmas week and I'm looking forward to having him here.  Today Troy is at the house waiting for the plumber and handyman.  Thank goodness because that makes it possible for me to be here as long as possible.

It got cold overnight.  Must have been quite a storm, but I slept right through it.  They said on the news this morning that some people lost power.  I should have turned off the A/C before I left, but forgot.  I might need the heat tonight.

We won't be at the hotel until Reid is discharged, so I'll be driving both ways until then.  We're required to stay near the hospital's ER for a while after discharge.  I think how long is how quickly his counts go up and if there's no problem with Host vs Graft Disease.  I hope it won't be too long because of the animals at home.  Keith will be coming to stay at the house for a while which will be a big help.  I talked to a lady a couple of days ago who told me that they went home when her husband was discharged and let them think they were staying nearby at a hotel.  They don't check and take your word for it. but I just wouldn't take a chance.

Thanks again for your prayers.

Tuesday, December 18, 2012

Transplant Update

A bed was available on the evening of the 14th.  Patients wait at home for a phone call and are admitted sometime between 6:00 PM and midnight.  A little after 9:00 Reid was told the room would be ready a little after 9:30, so he got ready and we drove down.  Stem cell patients are kept on the 17th and 18th floors.  They're private rooms and are very large with a couch that opens up, a desk, recliner, and 2 TV' for the patient and one for visitors.

He was started on chemo and felt OK until today when they started a different type of chemo for today and tomorrow.  This one is pretty brutal and he's had it before and knows what to expect.  He will develop painful mouth and throat sores.  While being infused he's chewing on ice which is supposed to help.  The nurse explained that chemo doesn't like cold and chewing on ice will hopefully keep it from destroying some of the good cells in his throat and mouth helping to cut down on the sores a little.  Last time he was given a morphine pump when it got bad and I'm assuming the same will be done this time.  Then he'll have a day of rest before receiving Keith's stem cells on December 21st.  The doctor told him he'd be pretty sick around a week after entering the hospital and will be for a while I guess.  He knows he'll be very fatigued for the foreseeable future.

He's really a good sport about everything.  He doesn't complain much at all and I personally feel he's more than earned the right to complain.  I wish I could stay this evening, but I have trouble with my depth perception driving at night and know I shouldn't really be doing it. I'll have to leave a little before 5 as it's dark here by 6.   Jim drove at night the last time.  I'm just glad that I don't mind driving on the freeways.  I've known people that decide they no longer want to do it and stop.  Then something happens and they can't get where they need to go.  You can't ask someone else to spend hours at a time down here like we do.  We were down here most days for the last two weeks leading up to his admission. 

They are shooting for a January 10th discharge date, but that will depend on how things go.  He did run a fever two nights ago, but nothing showed up in the chest X-ray.  They ran another test and until we get results visitors now have to wear a paper gown in addition to masks and gloves.  (It's a little tricky typing with gloves.)

When he's discharged we have to live nearby for a while before he goes home..They want him no more than 30 minutes away and we're about an hour.  I walked across the street today to The Rotary House which is a hotel owned by MD Anderson and managed by Marriot.  It doesn't cost that much more than where we stayed last time, so we'll be going there.  It's attached to the hospital by a walkway and I'll save on parking.  They also do blood draws there which might make it easier too.  I'm sure it will be super clean.  With Jim gone now I'll just feel better having him real close to help if needed.  In a pinch I can push him across the street to the Emergency Room.

In the hospital decorating contest the tree on Reid's floor won first place.  I took a picture with my cell phone and will try and post it soon.  It's quite original.

Thank you for your prayers and support.

Friday, December 14, 2012

Change of plans...

MD Anderson called Reid a little while ago and told him that there are no empty beds.  So, he will not be admitted tonight.  They expect him to be admitted tomorrow and hopefully this will not effect the treatment plan.  He had chemo yesterday in anticipation of being admitted today.  They were not planning to give him chemo today, so I'm hoping they'll be able to stay on schedule with the chemo tomorrow and still be able to infuse him with Keith's stem cells on the 20th.

Since I now have a little extra time tonight I thought I'd post a few pictures and then get to bed early!  All of these pictures were taken with my cell phone because I forgot my camera.

This is Keith the day he donated his stem cells for Reid.
He had to keep squeezing that red thing  in his right hand so the blood would keep flowing.  It went through the machine, the stem cells were extracted, and the blood returned to Keith in his left arm.
He was a little uncomfortable because they had been giving his two shots daily for a few days so his body would produce more stem cells.  That caused the larger bones in his body to ache and gave him headaches.
He couldn't move his arms for three hours, so I changed the TV stations for him.  The stem cells are now frozen in a lab somewhere at MD Anderson.

The hospital is decorated for Christmas and they have a decorating contest.  Personally, I thought the 10th floor pharmacy went the extra mile with their decorations.

The staff dressed as elves and graciously posed for my picture.
The stem cell recipient and the stem cell donor got to pose by their tree.  That's Reid on the left and Keith on the right.  The tree was decorated with the staff's pictures, but you probably can't really see that in this picture.
One of the elves took my picture with Reid.  These are probably the only Christmas pictures we'll have this year.
They even had a fireplace.
They also had fake milk and cookies for Santa, but I neglected to take a picture.

Thank you for your prayers and support!

Wednesday, December 12, 2012

Lots happening now!

This has been a very busy couple of weeks!

Yesterday Keith was finally ready to have the stem cells harvested.  He had been receiving two injections daily since last Friday.  (The shots left his with bone pain and headaches which was to be expected.)  He was hooked up to the machine with both arms immobile for three hours.  (I was kept busy changing the TV stations, taking pictures with our phones, etc.)  We got the good news today that there were over 6 million stem cells collected and only 4 million are needed to proceed.  So, everything is a go and Reid will be admitted to the hospital on Friday.  Tomorrow he has some chemo on an out patient basis and then will receive more when admitted.  This is to hopefully destroy any remaining cancer and also destroy his bone marrow so there is room for Keith's stem cells.

What is happening is pretty much the same thing Robin Roberts of Good Morning America has gone  through.  I've been following her story with interest on GMA.  It was very encouraging to see her a few day ago celebrating Christmas with her co-workers when they visited her apartment.  She is definitely starting to look better.

We do have to worry about infection when Reid's immune system is destroyed.  It will take time for Keith's stem cells to take over and there is a small risk that they won't.  He will also have to be carefully followed for any signs of host vs graft disease.  And he'll be more susceptible to infection for six months to a year.  But the big concern is just getting rid of his cancer once and for all.  He has a more resistant type of Hodgkin's Lymphoma.

Reid is scheduled to receive Keith's stem cells on December 20th.  That will be day 0.

I'm sorry that I still haven't had time to catch up with E-mail or post some of the pictures I've taken the last couple of days.  When things slow down and I have a burst of energy I'll try and get caught up.

Thank you for your warm thoughts and prayers.

Thursday, December 06, 2012

Busy, busy, busy...

I haven't been able to check E-mail lately, but might get a little time this weekend...we'll see.  I'll try and post updates here as often as I can.  We're busy all day and in the evenings I'm usually too tired to consider getting online.

They weren't able to get all the new floors down, so the hallway and computer room will have to wait.  The rest did get done, but taking up the brick kitchen floor made a mess.  It was far dustier than the slab work had been.  They had to grind to get some of it up and everything in the front of the house was covered in a fine brown dust.  I ended up sending Reid to a motel because we didn't think he should be breathing all that dust in right now.  Troy and Debbie came over on Sunday and helped me clean and dust.  We worked for hours, but the place is so much better now.  Just in time for Keith to arrive from Austin on Monday.  Thank goodness things were somewhat organized by then.

Reid's latest scan results were good!  The mass continues to get smaller and things are moving forward as far as the stem cell transplant goes.  Reid and Keith have been spending time down at MD Anderson undergoing all the remaining testing.  We spent all day Tuesday down there and today Keith is there for a half day and Reid another whole day.  I did not go today.  Reid assured me he'd be OK and he's feeling pretty good considering he had another infusion on Tuesday.

I've just been exhausted and Friday morning I will be going early with Reid since he's scheduled to have general anesthesia for the CVC.  That was his one request.  He wanted general anesthesia this time since they had trouble inserting it the last time and it was quite painful.

So far all the test results they've gotten back on Reid and Keith are good.  Unless we hear otherwise I'm still expecting Reid to be admitted to the hospital sometime before Christmas.

I need to get my butt in gear now and get a few things done around here today.  I only have so much energy and there's so much to do.  There's just so much going on at one time.

Thank you for your prayers.

Update:  Just heard from Keith.  He's been approved as a donor and will begin the injections to produce more stem cells on Saturday.  Hopefully, within a week they'll be able to harvest the stem cells.  Also, waiting on the last of Reid's tests, but assuming they're OK at this point.