WIth Heavy Heart

Dear family and friends,

After her long battle with cancer, Rachel passed away in her sleep tonight.  She was at peace with family by her side.  There's no pain where she is now.

Rachel was a beautiful soul and she lived a wonderful life.  Always with a smile, she inspired many people in many different ways.  She was a devoted wife and mother, driven by her love of family and her faith in God.  She was an amazing woman and strived to make a difference in everything she did.  My kids and I will struggle to find our way without her... I hope you will please say a few extra prayers for Chris and Katie as we face that struggle. 

Throughout her treatment, Rachel and I were overwhelmed by the level of compassion and support we received.  She was ever grateful for your prayers and well wishes and she garnered strength from your words of encouragement.  We were (and continue to be) blessed to be surrounded by such caring friends and family and I hope you will accept my heartfelt gratitude for all you have done.  Rachel's family, the kids, and I thank you for your empathy and kindheartedness. 

God Bless,

Brant

It's been a while.......

Sorry to be so long to update the blog, but I have been out of it the the last two weeks.  Unfortunatelty I went down to Duke and they drew blood work but my genetic mutation did not match the clinical trial.  So I came back to clinic one day at VCU,  I think I was admitted on Tuesday June 8th for fevers and and stuff.and they have kept me here for more standard chemo.  I finished a five day course of chemo two days ago, but they cut off the last day  because I was having some neurolological issues. So now is the recovery.

I should be in the hospitial another 2-3 weeks while my counts recover.  When my white counts get high enough they will will do a biopsy to see where the leukemia counts are at.......hopefully none.  That is our prayers. 

 I have hsve had some complications with pneumoia that they were worried would turn into fungal infection, but that is under control with some new meds ands that seems under control.

All in all I am a little more alert these day.  I miss the kids kids but they will be here tomorrow to visit.  It is very boring sitting around each day and I have I have little motivation, but I will try to push myself these next few weeks to be pro-active.

Love you all.

Update

It has been a busy and trying week.  Last Saturday Brant took me up to clinic and I had a fever of 101.6, so they admitted me to "keep an eye on things" and make sure nothing else was brewing.  I was able to get IV antibiotics and extra transfusions. Brant spent the night on Saturday and then swapped up with mom on Sunday.  It was kind of boring sitting around without any of my gadgets and paperwork (my son's backpack got put in the car instead of mine!).  I had my biopsy Monday using a Cat Scan to guide the needle.  I was totally out and don't remember anything after they said "we are going to start some of the relaxing drug".  The only pain I felt was sitting on my bum for the ride home.

I was able to spend Tuesday at home and go to Chris' Spring Orchestra concert.  They played his arrangement of 21 Guns by Green Day and it was really good.  What a blessing that the timing worked out that I could be there.

Wednesday Brant and I headed out for clinic to get my platelet transfusions and finalize plans for our trip to Duke.  We drove to Durham from Richmond and got there in time to relax a little.  Today was a long day of talking with the doctor, Nurse Practitioner, and Research Nurse.  They have one clinical trial open that they think I qualify for.  They are ready to start me Monday, but we need to find out if I have the correct genetic mutation to qualify.  Thankfully they did not do a biopsy and instead think they can determine the information from my peripheral blood.  Also, it is a Phase 1 trial so we will have to find out if insurance will cover it.  It is surreal to me that on Monday I could be in Durham for quite a while.  There don't seem to be many other clinical trials around, so we hope this one works out.

The leukemia is definitely more active with my fevers and pains being more frequent.  We will be challenged with the decision to start "standard" reinduction chemotherapy and hope for a response if no trial presents itself.  But it is clear that I need to start some sort of treatment sooner than later.  Please continue to lift us up in prayer that miracles can happen.  And also to keep the whole family in mind.  So many people have been making sure the kids make it to all of their appointments, activities, etc.  We are so grateful.

Not the News We Wanted

Although my biopsy isn't until next Monday (6/2), they did some extra testing on my blood that is showing blasts.  They told us in clinic on Tuesday (5/27) that it looks like my leukemia is back.  They don't want to wait for the biopsy results and feel I should start talking to Duke or Hopkins to see what they can offer me.  We have an appointment next week at Duke to see if I am eligible for a clinical trial there.  We haven't heard much from Hopkins yet.

Since Tuesday I have just been getting platelets every other day and resting at home.  I have aches and fevers in the morning and evening but Tylenol helps, but my energy is still pretty good.  On Monday, I hope there will be time to talk with the VCU doctors about all of the options out there. Please pray that we will be led to the treatment that is best for us.  It is a very hard time right now as it feels like there are fewer and fewer options available.

We told the kids on Thursday and they are really sad but holding up ok.  We really don't know what the next few weeks will hold, but we will take it one day at a time.  We will just lay it at the feet of the Lord as Brant says and continue to pray for miracles.

Memorial Day

I hope everyone had a chance to remember our fallen heroes today and the holiday was not just lost in burgers and family cookouts - although those are great, too!  We were in Richmond for the last day of Chris' volleyball tournament and I saw some of the coverage of the ceremonies at the War Memorial on TV.  Actually I was in clinic while Brant and Katie were down the street at the Convention Center with Chris.  We had a really nice 3-day weekend in Richmond with the other volleyball families, and it made my commute to clinic on Sat and Mon very quick!!

I know I haven't posted in a while.  It has been an up and down time for me. We have been in Richmond WAY too much over the last two weeks and the kids have had very busy schedules, too.  I am behind on my own personal journal, which I really like as a daily reference as to how I was feeling, what the docs changed, what the family did, etc.  As many of you saw on FB, we lost a good friend in the transplant program last week, and then later in the week I found out another has been placed in Hospice with not much time left.  It just really takes the wind out of your sails as you try to get up each day and fight to be positive.  Especially when you are having issues of your own.

My blood counts are not as high as they were last month and my platelets have really fallen.  I am back to getting platelet transfusions every day or every other day.  I was able to do my two days of photopheresis last week on Wed/Thurs.  My WBC count hung in there at 2.0 on Day 1 and 1.8 on day 2.  It wasn't too bad.  Just lots of sitting.  After photopheresis on Thursday, one of the Dr's told me they have seen some blasts circulating in my blood for the last three samples - could be leukemia....could be something else......  They sent off for more special tests but due to the holiday weekend I have no results.  They are trying to move up my biopsy to this coming week.  The medical team has pretty much said they can't tell me what is going on until we have good biopsy results.  So we will try to give all those worries to God until that point at which we have information to know what is happening.  "Can anyone of you by worrying add a single hour to your life?"  Matthew 6:27.  And until that point, back to our motto - we need to try to enjoy each day as it comes.

I am down to 30 mg of prednisone now and should be completely done in 2-1/2 more weeks.  Donuts and Oreos are much safer.  They are tapering me down quickly in case it is suppressing the bone marrow and/or the immune response of my donor cells to kill leukemia.  I have felt so tired and achy - especially after photopherersis - and have used a lot of Tylenol and had low grade fevers.  The nurses told me that it is not easy coming off of prednisone as you own body has to ramp back up making cortisol.  So it was good to hear a possible explanation other than leukemia which is always where my mind always tends to wander...... 

I went to clinic to get repletions today and needed blood and platelets.  I spiked a temperature of 102.6 in clinic but it came down with Tylenol.  That earned me two bags of IV antibiotics and a return trip to clinic tomorrow.  Door #2 was getting admintted...... We went with Door #1. By the afternoon I felt much better and have had no fevers or aches to speak of.  I enjoyed sitting outside for a bit today in the evening shade and looking at our plants.  It really was a gorgeous weekend.

We ask for prayers of peace as we wait out a few more weeks of uncertainty.  And we are always trusting that God is bigger than this and will see us through.

Vidaza Days in Richmond

We are on Day 3 of my 8th round of Vidaza.  This is my first "maintenance" dose so we are only here for 5 days and I hope to be home by Friday afternoon! The knockout roses around the Coliseum are in bloom for our afternoon walks.  I just love to look at them.

My WBC count has been rising and today I was up to 2.2.  My platelets have been a little more sluggish and only got up to 68.  They were down to 56 today.  I would like to see them up above 100 again - that was nice.  My HgB (the red blood cells) have been 8.0 every day here in clinic.  That is what they transfuse me at, but I have pushed it off each day waiting for them to drop below 8.0.  It was really cool to see my blood type as B Pos on the lab sheet for my type and cross.  I guess I didn't fully believe I had switched to George, but looks like it has stuck.

I saw the Dr. today and discussed my biopsy results, which of course wasn't much.  The pathology summary statement was something like: the lack of bone marrow aspirate for.....special studies precludes additional evaluation, and it cannot be determined if the immature focus (cells I think) represent delayed bone marrow regeneration or residual acute leukemia.  There were a lot more words than that, but I didn't understand them...lol.  So I have to take away the good things from the report: they didn't find any obvious signs of leukemia and my chimerisms (% me vs % donor) are all 100% donor for what they could test. 

They are going to probably do my next biopsy with Interventional Radiology.  The doctor feels very confident I have aspirate somewhere....I couldn't be producing the blood counts that I have and I couldn't have switched to George's blood type if I didn't have it.  He just thinks either my bone structure, or too much chemo and too many biopsies have "relocated" it. So they will use a Cat Scan ( I think ) while they do the next biopsy to look for the aspirate and guide the needle.  I really don't care if they just put me out and find the stuff.  He didn't seem in too much of a rush to do one.  Great..... more waiting for info.  But the medical team seems happy with where I am at right now and they want to focus on getting my counts up and looking out for GVH.....not poking me for bone marrow.  The photopheresis is also on hold for now.  We will see where my counts are at the end of the week and I may come back next week or they may hold until my next cycle of Vidaza. 

My prednisone was reduced last week to 40mg per day and I have definitely started to feel it.  I am more like Supergirl now than Superwoman.  I have more days with less energy - especially after days when I have done more activity.  Yesterday was a high energy day and I used the elliptical for 10 mins here at the Hospitality House.  That was a new set of muscles since I have been doing the recumbant bike when I exercise at home.  I woke up today very tired and sore, then realized I was fever-achy.  I spiked up to 100.4 before taking Tylenol.  They did cultures and viral testing in clinic today, so I will know tomorrow or Friday if I have caught a bug.  But I really don't feel like it.  I was just tired today.  My fever never came back up and I hope it doesn't reappear tomorrow morning.  It seems like whenever I overexert myself and get sore, I get a temperature and achiness.  Not sure if that is what is going on.

I gotta mention what an awesome Mother's Day I had.  It was such a blessing that they pushed off my Vidaza a few days so I was at home instead of in Richmond.  The kids got up early and made me muffins...without any assistance or fires.  They brought me breakfast in bed.  You know you have "cancer kids" when they bring you your morning meds with breaksfast so you don't have to get up.  We went to the early service of church which wasn't too crowded and then Brant and the kids planted my summer flowers since I'm not supposed to dig in the dirt. I also got some new clothes in my "smaller" size for the summer. There were a few quiet hours at home alone in the evening to round out a perfect day.  Thanks so much Brant and kids!

Well, I better get ready for bed.  Only two more sleeps as they would say in Australia and then I can go home!

Photopheresis Fun

I had another nice week at home after returning last Wednesday from my biopsy.  They gave me the whole week off but I did go to the local oncologist on Monday to get my labs checked.  My white count creeped up from 0.6 to 0.8 and my platelets were rising from 32 up to 46.  Not very big increases, but at least we are headed in the right direction.

Mom and I headed out Wednesday morning - again early for an 8:30 appt and again with me feeling tired and not so energetic.  I think the prednisone gives me a false sense of energy and every few days my body says - "whoa! time to take it a little easy and rest."  It was Nurse Appreciation Week so we stopped at O'Doodle Doos to get two dozen (plus 1) donuts for the nurses.  I did not touch their stash for the 1-1/2 hour ride up.  Very impressive.

I headed over to the Apheresis clinic and got the same nurse that George had on his last day here in February.  I had to be consented by the Resident before beginning the procedure.  He explained the process a little bit more - take out a portion your blood, put it in a spinning machine to separate out the white cells, add some medicine that makes the blood sensitive to light, shine UV lasers thru the white cells, return blood to your system.  Repeat for 3-4 hours. I knew my white count was low, so I asked him how much this dropped your white count.  He wasn't sure...

So I got my labs drawn and they started me on the machine.  Fortunately the port I have installed on my left shoulder will work so no needle sticks in the arm.  The needle they use is VERY large and even with the port it was somewhat uncomfortable.  I felt very badly for George having TWO of these in his arms for two days.  I fell asleep pretty quickly only to be woke up in a hour when the nurse got my labs back and my white cell count was only 0.9.  Well, yeah, I could have told you it would be low. (My platelets were up again to 57 and my HgB was holding). Apparently you are supposed to have a white count of 2.0 or higher (preferred) or at least around 1.5.  This is both for safety and effectiveness.  Since they are treating the white cells, if there are none there, the treatment isn't really doing much.

So there was a flurry of activity and they paged one of the bone marrow doctors.  They went ahead and did the light treatment on what was in the chamber - it only took 10 minutes since there were so few cells.  Then they took me off the machine and cancelled me for Thursday.  Mom was highly annoyed since the whole mishap could have been avoided by several different people in the chain starting with my doctor last week and ending with my nurse that morning.  But it is not a perfect process for sure. 

I headed over to the bone marrow clinic and had a  quick visit with the doctor.  They will do the photopheresis when my counts come back up.  They seem to be a little sluggish this month and so the doctor took me off of the immunosuppressive drug and reduced my prednisone from 50mg to 40mg/day.  My liver numbers are all back in normal range, so hopefully they will stay there as the meds come down.  I am still scheduled to come back on Monday to start my lower dose of Vidaza chemo.  Oddly enough, my counts tend to be the highest the week of and one week after chemo, then they fall for 1-1/2 weeks before starting to climb back up.  They should get high enough to do photopheresis later in the month.

So we gathered our things from the Hospitality House (mom had already unloaded for our overnight) and headed back home.  I have been a little less energectic and had a lot of muscle and bone pain Wednesday night.  I have been exercising both doing the recumbent bike and some light strength training (at home since my counts are still low).  So I don't know if it is soreness from that, or maybe my bone marrow getting busy making cells because that tends to cause aches, too.  They will check me on Monday for graft vs host of the muscles which can happen as well.  It has been a little better and Tylenol works well to keep the discomfort down.

I am looking forward to the weekend even though it will be HOT.  I like heat and am so tired of being cold.  Happy early Mother's Day to all of you moms out there.  I hope you get spoiled rotten!!  I so remember last Mother's Day of being in the hospital.  My doctor came in for rounds and casually mentioned that my biopsy showed empty bone marrow with no leukemia present.  It was such an exciting day and my first good results in this whole process.  But I will enjoy even more this year of being at home with my kids where a mom is supposed to be!

Disappointing Biopsy

After several days of feeling great and having lots of energy (prednisone) I was nervous about my biopsy appointment on Wednesday.  I woke up feeling not so good.  We had to leave earlier than usual for an 8:30 appointment.  I did manage to get in a donut on the way which made me feel a little better.  At clinic I had a low temperature of 99.7 which is probably why I felt kinda bad.  Amazingly my weight was about the same despite my new appetite.  They had to wait for my lab results before I could do my biopsy.  My platelets came up slightly from 22 to 31 which was good.  My WBCs fell a lot though, down from being over 2.0 to 0.6.  I have been tracking my counts and I had this kind of drop last month after Vidaza chemo, but still it was disappointing.  I had hoped maybe my bone marrow would be stronger and get thru things this month.

So the biopsy didn't go well.  Even though they have the best guy who does the procedures, he couldn't find any aspirate.  That is the liquid material in the spongy part of the bone.  He tried 5 spots...after giving me 50 mg of extra phentonol...so the pain wasn't too bad, but I was in tears from disappointment.  I knew that it meant I won't get any results about blasts or whether they see leukemia.....so more weeks of unknown.  It also means my bone marrow is very empty again.

The doctor came to see me and was very sympathetic.  They have so much to try to balance - fighting leukemia with chemo, backing down the graft vs host with prednisone, and trying to build up my bone marrow.  Of course,  treatments for one of these usually means making the other two worse.  They have decided to focus on building up my bone marrow for now.  So I will start photo-pheresis next week to control the graft vs host.  This will allow them to take me off the prednisone and immunosuppressant drugs which are suppressing my bone marrow and limiting the ability of my new immune system to attack leukemia.  They are also switching me to a maintenance level of chemo (still Vidaza).  It will only be half the intensity and for 5 days instead of 7.  It will be less effective at killing leukemia, but it will not hit my marrow so hard.  They are delaying my next treatment a week to give my marrow some extra time to build back up.  They would like to give me more of George's cells, but because of the liver response last time, they are going to wait and see how the other things work.  I don't know too much about photo-pheresis yet.  It is for two days a month for a year.  I sit in a chair for about 4-5 hours each day while they pull my blood out of the port, run it through a special light that kills specific t-cells that cause GVH, and then put it back into the port.  It will be in the same place where George did his stem cell collection.  I go next Wednesday and Thursday for my first treatment.  It is a fairly new treatment method and I think I will actually be part of a clinical trial.

So it was a very long and emotional day.  I also needed a blood transfusion and I just had one 9 days earlier.  But on the way home we hit Steak and Shake, and a good milkshake seemed to make things a little better.  Plus mom, who was upset herself, is always such a good encourager. I think I am pretty well over the disappointment now.  My energy was right back on Thursday and I have been insanely busy again for the last several days. There has been much work done around the house.  I enjoyed a night with some girlfriends at home on Friday.  We went down to the beach today and walked on the boardwalk.  It was chilly but a beautiful day and way to get my walking done!

My family got me a new exercise bike/elliptical as a one year gift so I can do my cardio at home.  No one seems too excited about me going to the gym, especially with my counts low again.  Brant and I talked today and he encouraged me to back it down a few notches.  The prednisone has me feeling like I am normal (or a little super human) and I am doing and eating normal things, but I really shouldn't be pushing the limits so much.  So I am going to try to get back into a more cautious mode again even though I want to do like 10,000 different projects.  It is exhausting for him to just listen to me.....ha!  I wonder what my energy will be like when I come back off the prednisone....?

It is late and I should get off to bed.  Thanks for keeping me in your thoughts and prayers.

One Year Anniversary

It is hard to believe that one year ago we walked thru the doors of the Massey Cancer Center Bone Marrow Transplant clinic and were in a hospital room that night.  What a blur it all was - less than two weeks between when I first felt sick (weak) and having to choose where to receive treatment for a disease I didn't really even understand.  We were so scared, confused, anxious....you name it. Yet now we have gone thru an entire calendar year of holidays and milestones, of tears and of celebrations.  Although I am not free of this disease as I had hoped, I am so thankful to be sitting here at home typing this in relatively good health.  If you look at the statistics for secondary AML (which I do not recommend), I am a major success at being a 1 year OS (overall survival) data point.  Next goal: 2 year DF (disease free) data point.


I am so glad we chose VCU.   It was tough to know what to do.  People said Duke or Hopkins, we also considered going back to Sloan Kettering in NYC where I was treated in 2007.  But Richmond seemed to fit.  The team of four doctors has been wonderful and I feel like my case is handled with more individuality than at a larger center.  The nurses are like our extended family, and the other patients really form friendships with you as we keep up with each other's progress.  Virginia is fortunate to have such a good cancer center available to us - I just wish it could be in Hampton Roads!!  We do know I-64 very well by now!


I am still having a good week.  The prednisone is causing me lots of water gain so I feel like I have elephant legs and feet.  They called yesterday and reduced my dose some, hopefully at clinic tomorrow I will be reduced even more.  I can't sleep very well and you probably don't want to get in a conversation with me right now as I am totally wired.  Another exciting tidbit is that my blood type has officially switched over - I am now a male B+ blood type thanks to George's cells taking over completely.  It took a while, but we are getting there.


Why is it so hard to believe in miracles??  As we approach next week's biopsy I am so hopeful that it will show good strong marrow and no signs of leukemia.  We pray for this daily. We tell God that we know and trust he can do anything - beat the odds, make it happen when science says it can't.  I have been feeling so good and all of the signs are pointing that way. Yet I find myself still full of fear and scared to let myself believe it could actually happen.  It's like it is easier to trust when things are looking bad than to believe when things are looking good.  I have images of God being a tad bit exasperated with me...."You've been asking.....did you think I wasn't listening?".  Anyway, I will quit rambling, I just find it odd that sometimes I am most scared when things are going most well.


Here's to the start of another year!

An Awesome Easter Weekend

After getting back from Richmond on Tuesday I was pretty wiped out. The couch and my electric blanket with Max the Cat at my feet was most of my day on both Wed and Thurs. The kids were on Spring Break so there was still a fair bit of running around and fixing food and cleaning up, but it was a struggle. I had some tears just being so tired of the whole unending process.

Then Friday I woke up with energy - I think the steroids have kicked in - who knows. Chris had a volleyball tournament in Richmond on Saturday so we went up to VCU clinic Friday afternoon and spent the night in Richmond. My counts were still good and I didn't need anything at clinic. We had a nice time going out to dinner - food is definitely my new hobby. On Saturday we were at the gym most of the day - the boys did great and I had a nice time talking with the parents and watching them play. We made it home late Saturday evening after a fun dinner with our friends in Richmond. Poor Brant had to drive us home while we all relaxed in the car.

Sunday we were able to go to church. I am still a little apprehensive around crowds and Easter is definitely not a slow day at church! But it is one of my favorite holidays with so much hope and promise for the start of a new year (winter is part of last year in my opinion!!) and of course celebrating the Greatest gift the world has received. So we threw the gang together Sunday morning and our friends held us some nice seats together in the back. The music was wonderful and one song "I'm Free" just really resonated with me. I have felt so trapped by this disease lately, especially when my energy is low I get depressed and just want to be DONE WITH IT!! But on Sunday as we sang that song, I truly felt free of it - whether it was there or not. I could enjoy right now, being together, worshipping with our church, feeling strong enough to stand up the entire music time (which is no small feat!!). Anyway, it was just wonderful and I was very happy. Here is our impromptu Easter family pic.

Later we had a nice meal and visited at my parents with Ruth and then for dinner had an awesome time at Brant's cousin's house with his family. We didn't get home until almost 9pm but I wasn't exhausted. My belly was full (did I mention I like food these days??) and I was ready for a good night's sleep. So I had a great weekend.

Today my energy level has continued to be high. I definitely think it is the prednisone steroids. My lips are slowly disappearing into my fattening cheeks (steroid face). Mom thinks it is nice, I hate it. We went up to clinic together today and it was a LONG day. They were very backed up and I needed a blood transfusion. It has been three weeks since my last one so that is really good. Mom and I didn't make it home until almost 6pm but at least the sun decided to come out and the drive wasn't too bad. I will go back on Friday and see the Doctor. My goal is to get off prednisone, although I am sure the best I will get is to have it lowered some. My liver is almost back to normal, but they will most likely taper me to prevent a flare-up.

Next Wednesday is biopsy and seeing the cardiologist. Again, I hope to talk them out of some drugs. But it just seems like when they put me on something and it works, they are SLOW to take it back away. We are eager to hear biopsy results. My wish is that they become more definitive and show that the leukemia is not around. But you just never know what they are going to see.

Well, I better go find something to do with all of this energy. Eating donuts is on the top of my list, but I am trying to be good. My tastebuds have lost the salty/savory sensation and apparently tripled in the sugar area. Bummer. I have put back on about 5 lbs which is good. I think I will start trying to go to the gym and work on building those muscles up. The doctor said I could go if it was the middle of the day and if I cleaned off the equipment really well.

That's the update from here. Hope everyone has a good week.

Finishing Up Round 7 of Chemo in Richmond

Tomorrow is my last day of Vidaza chemo for this month and hopefully I will be going home for my three weeks off (except for day trips for clinic checks). The week started with me being very weak and feeling bad. But the drugs they have put me on have really dropped my liver enzymes and I am almost back to normal levels. I will continue to stay on the drugs for a while to make sure this flare-up of Graft vs Host (GVH) does not come back. My heart rate has also dropped back to normal and I am hoping I can lose a cardio drug after seeing the cardiologist in a few weeks. I counted up my pills and I take about 32 a day - yuck. There are several of the same kind, but it is still a pain getting them all down!

I will not get a boost of donor cells this month as previously planned because they don't want to cause any more GVH right now. The cells I got from George back in February still seem to be working strong!

My blood counts have been really good lately so I am hopeful that the bone marrow is regenerating. I haven't had any transfusions in quite a while. Even my Hgb seems to be staying up on its own which has not happened since my transplant last year. I still expect my counts to drop a little here in a week or so from the effects of the Vidaza chemo, but hopefully they will bounce back before long.

I have a biopsy scheduled in about two more weeks. I am anxious to see if the blasts are still there. It is tough living from biopsy to biopsy....especially when the results aren't all that conclusive. But as mom says, I am here to enjoy another day and we just have to go with it.

The predinisone steroid they have put me on has really increased my appetite - especailly for SWEETS!! But I haven't really put on much weight because all of the new meds still seem to have my intestinal tract tore up. But in general, I am feeling better now than when I arrived here last Wednesday. When I lay down I feel like I could sleep all day, but if I get up (or am kicked out by mom) I find a little energy. We have taken a few outings to get out and stretch my legs. My muscles are really weak and I know I should be exercising more but my motivation is low. It would be nice to have a trainer or therapist come over and just tell me what to do, but that is one more thing to deal with and I really do know how to exercise - I just need to do it!

I am excited to get home tomorrow and see Brant and the kids. It will be nice to get back into the family things. It has seemed like a long week away from home. But we have had a nice stay and I am grateful for all that the nurses and doctors are doing to get me better.

A Rollercoaster Week & Living in Limbo

My biopsy went well last Monday without too much pain. Ruth and I had a nice trip up to Richmond. We had to wait some extra time because my Hgb was down to 7.3 and they waited to send my type & screen until after my labs were back which took forever. My labs were wacky in that my platelets went way up, but my WBCs plummeted. That was a little discouraging. So an hour wait for the type, then 2-1/2 hours to transfuse the blood, after getting the biopsy.... It was a long day! Maybe it was the fentonol, but I was in a good mood and chatted with several of my transplant friends. We did make it home by 5pm. On Tues it was such a pretty day I went walking twice around the block with a friend. But thru the rest of the week my energy seemed to drop.

On Friday Brant took me up to Richmond for a clinic check and preliminary biopsy results. My WBCs continued to drop, but my Hgb held and platelets went up. I was a little concerned when we got put in a consult room instead of an exam room. The Dr. came in to say that my blasts were at 60% after being <5% (normal) at my last biopsy. The doctor seemed as surprised as us with the results which the pathologist deemed as a major relapse of leukemia. He suspected maybe something else was going on since my counts in general were rising, and my bone marrow is now 100% donor which is a good thing. Last time there was about 17% of my stuff still lurking around. He ordered extra slide stains and said we would just have to wait and see. So it was a long weekend and we opted to not say much to the kids or update the blog since we didn't really know what was going on.

Over the weekend I got weaker and weaker. It is frustrating when you just want to get up and do stuff. I'm sure some of it was the mental load on us as well. I did enjoy sitting and watching Chris' volleyball tournament on Saturday. By Sunday I was so weak I made an appt in Richmond for Monday thinking I surely needed blood...plus I wanted to see if any more results came back.

Monday Mom took me back up to Richmond. I had lost 5 lbs over the weekend...not good. My Hgb was fine but I found out my liver enzymes have skyrocketed and they are thinking Graft vs Host where the donor cells are attacking my liver. They sent me home after stopping one med (again, I needed no repletions which is a good thing), but I wasn't happy at how cruddy I felt. I was due back on Wed to start my chemo and they will see then what my liver is doing.

On Tuesday, the Dr. called me twice to report that my additional tests, including the FISH and cytogenetics, had come back with no signs of Leukemia. This was pretty exciting. He thinks the blasts are my donor cells trying to make some new marrow, which is still pretty sparse, but a little better than last biopsy. It isn't a traditional way of seeing things, but since when have I been normal??? They will biopsy me again in a few weeks to see what all those blasts have done.... Hopefully grown into normal blood cells. The doctor still feels that the weakness and fatigue are a result of possible GVH of the liver. Even though I was still pretty weak I enjoyed watching Katie's volleyball match and passed out the team shirts. Don't even ask me how I got suckered into that one, but to her credit Katie did the majority of the work. I woke up the next day with sore triceps from folding the shirts while holding them up. Guess I haven't used those muscles in a while!

So today I am back at MCV for a week of chemo.... Just what I want to start when feeling like dirt...lol. My liver enzymes almost doubled since Monday and my blood pressure was below 90. So it has been a busy day. I got fluids to plump me up, but again didn't need blood or platelets and my WBCs are starting to rise. The doctors decided to jump on the liver issue as though it is GVH without doing a biopsy since that is kind of invasive. I have a liver ultrasound tomorrow to rule out leukemia or infection in the liver. I have started a steroid, an IV anti fungal, and a mild immunosuupressant to beat back the donor cells a bit but hopefully not interfere with them keeping the leukemia away. And of course they are going to suck lots more vials of blood out of me to run more tests. We may make it back to the Hospitality House by 7:00pm - ha ha! But mom did say we got a sweet corner room with two beds (no cot for mom!) and a desk - wow! We must have hit the Platinum level based on our number of stays.

So that's the news from here. Lots of stuff going on, some sounds good, some may be a little scary. But it is always good to hear they don't see any leukemia. Hopefully treating my liver issues will get some of that energy back. One day at a time.... One prayer at a time.

Step by Step....Headed into Spring

But will Spring every get here???  Seems like we get one or two nice days and then it is a cold and rainy again!!  I think it will be here soon....and with it I am amazed that we are approaching the 1 year mark with this ordeal.  And with no clear end in sight it gets even more important to just take it one day at a  time.


My energy has returned about 50% I would say.  Still not to the levels I felt in Jan/Feb, but much better than the beginning of the month.  What is weird is that my counts have done really well compared to where I was.  I haven't had platelets since Feb 22nd.  They made it to a high of 96 but have hovered in the 30's and 40's recently.  My blood transfusions are also stretching out, and my WBCs have touched 2.0 and are hovering around 1.8.  That is much better than the 0.3, 0.5. and 0.8's I have seen mostly since October.  It will be interesting to see what my counts are tomorrow, since I haven't been to clinic since Wednesday.


This weekend we took a trip from Thurs - Sun to Blacksburg.  I was nervous being so far away and gone from clinic for so long.  My HgB was 8.1 on Wed before I left.  Even though they transfuse me at 8.0 they didn't want to give me blood and wanted to see how I would do.  I was cleared for the trip but took it easy.  It was nice to drop by and see some of my VDOT co-workers and finally get the last of my junk out of the office.  In Blacksburg the kids visited with friends and we visited with a few friends as well.  It was very emotional for me to be back in the place that we really loved but only got to have for a year.  That "WHY WHY WHY" thing and a little bitterness definitely surfaced, but by the end of the weekend I found some peace again in not understanding but knowing the God has it in his hands.  We have been very blessed here in Chesapeake and never would have been able to get through the last year as well as we have had we not moved back home.


Tomorrow my sister is taking me up to Richmond for clinic and a biopsy.  I hope they get a good amount of material and can fully run all of the tests they need to.  I am tentatively scheduled to start my next run of chemo on April 9th and then a DLI after that.  This DLI is scheduled to be 4x greater than the last one - yikes!  Anyway, I have a doctor's appt set up on Friday.  I know they won't have all the results by then, but they will have some preliminary results and we can get the discussion started once again - delay chemo? stay on pace? super DLI? regular DLI?....there are four doctors, so I like to give them some time to all get together and discuss it.  I am sure the biopsy results and my blood counts will be big factors in the decision.


I better head off and get some rest. 

Back at Home

I finished up my chemo run on Monday and was ready to come home. But I have been having problems with an elevated heart rate for a few weeks now, and on Monday in clinic it was 135 sitting and went up to 185 standing. Not really good. Mom was worried they would keep me in town while they set up an appt to see the cardiologist. But in a total "God-thing", Mom ran into my cardiologist near the cafeteria and he asked how I was. When she mentioned my heart rate he said "that's no good" and was up to see me in clinic in less than an hour. They put me on another heart med - I take one to keep my blood pressure up and now I take one to keep my heart rate down. Ugh...I guess it is all of the chemo that has messed with my heart. They said to come back to clinic and a cardiology appointment on Thursday, so I got to go home.

As of clinic on Monday, my blood counts were still doing pretty good. My WBCs made it up to 1.9 and then back to 1.7. My platelets had fallen back to 63 but were up to 75 again. So things are bouncing around, but that is a lot more cells than I have had in the past. The chemo usually hits them over the next week, so I won't be surprised to see them drop. I just hope there is good recovery in time for my next biopsy. It would be nice to not have such empty bone marrow this time.

It is wonderful being home, but my energy has still not returned. The achiness and fevers seem to be better the last few days and I am taking less Tylenol. But I get exhausted just walking from one room to the other. I really don't know what that is about. I have also been dropping weight and have lost my appetite. It is hard to force myself to eat, but I know that the calories are important. Thank goodness for nutritional drinks to fill in some between meals.

This has been a kinda downer post, maybe I should share some good stuff. We are finally getting a few of our rooms in the house painted. I'm not sure how great I did on picking out the colors, but at least it is fresh and new! Katie made the middle school volleyball team and was elected by her teammates to be one of the two captains. Chris is doing well with his travel volleyball team. He is also finishing up an orcehstra project where he composes the orchestra parts (violin,viola, and cello) for a modern song. He picked "21 Guns" by Greenday and it sounds really awesome. He and Katie both really love music....very different types, but enjoy it non the less.

Well, it feels like time for a nap...lol.  Lately it has always felt like time for a nap!

Vidaza Round #6

It is hard to believe that I am already 6 months into this treatment.  I tell everyone that January and February were great months - lots of energy, mostly at home, almost normal.....  March is a bit more difficult to define.  I continue to have fatigue and achiness.  I thought the fevers were gone, but I am still running low grade temps that occasionally spike to over 100.  On the other hand, my platelets went almost to 100 before drifting back down,.  They were 76 today.  My WBCs have been climbing.  I made it to 1.4 (I've been around  0.5 - 0.7).  My HgB still follows the same pattern with a transfusion every week to week and a 1/2.   They are the slowest cells to recover if my bone marrow ever gets going.

I met with the doctor yesterday.  He said the achiness can be due to my bone marrow starting to produce more cells.  Some of them can give off inflammatory stuff that can cause fevers and achiness that could continue for a few more weeks.  I could also be having a little Graft vs Host in my muscles, but lab results didn't support that theory too much. It could be the leukemia, but there are no markers in my bloodstream and the only way to really check is a bone marrow biopsy.  As of now my next one is scheduled for the first week in April.  He suggested using the Tylenol more frequently to keep the fevers and achiness away and see how things develop.

Mom & I are in Richmond for seven days getting my Vidaza treatments. Today was #4 so only three more doses (days) to go.  It has been nice watching my blood counts rise, but soon they will likely drop from the Vidaza, making it further difficult to know what is going on.  This is definitely one of those times I really wish I had a crystal ball.  But instead I remind myself to keep faith, keep hope and keep trust in God.  The worrying will not change what is going on inside my body one bit....well, actually worrying can make things worse with stress.  Just take it one day at a time!

Our stay here at the Hospitality House hasn't been too bad.  We have had two nice meals served by volunteer groups which makes the cooking easy.  It is funny when people think we are "new" to the place now that we are only coming once a month.  Either my mom or both of us have kinda been here off and on since last April......  Many of our close friends have gone back home by now, but we still run into them in the clinic occasionally.  We are sort of like the transplant class of July/Aug /Sep'13.

For all the prayer warriors - thank-you and please send prayers for more energy and that the cause of my fatigue and pain is for good reasons.  Pray that those stem cells that seem to have taken hold will weather this round of Vidaza and keep on cranking.  We pray for you all as well and thank God for your devotion to us.

An Interesting Week

I have had several days since last Friday where I was very achy and low on energy.  On Sunday I realized I was running a low grade fever (99's) and that I felt worse in the evenings.  This is a pattern that scares me because it is what I had last September when the leukemia returned.  On Tuesday Mom & I went up to Richmond for clinic.  My platelets were 76! My Hgb dropped to 8.0 and my WBCs were slightly up to 0.6.  I met with the doctor and they want to hold off on my next round of chemo a few days to see if my counts recover a little more.  He didn't have much to say about the aches and fevers....

We went home and that evening my temperature climbed to almost 101.  So I had to call in to clinic.  Luckily Tylenol brought the fever down and I did not have to go to the local ER.  We did, however, have to report back to clinic on Wednesday morning.  With the icy roads, Brant took the day off so he could be with me.  They did all sorts of cultures on me checking for an infection.  My platelets were at 96 so they are going crazy.  My HgB dropped to 7.6 so I got a transfusion of blood.  And those stubborn WBCs were back down to 0.5.  Not much to do but wait and see if the cultures grow anything so we headed back home.

Thursday was an achy day but my fever was not as high.  Friday was a good day and my fever didn't start until 7pm and went down on it's own.  Today has been another achy day but not much fever.  We were up in Richmond for Chris' volleyball tournament and I got my labs checked.  My platelets were 93 - down slightly but still up there.  My Hgb went to 9.1 after that transfusion on Wed. and my WBCs were up to 0.7.  None of the cultures came back positive so no viral or bacterial infections that they could detect.

So I don't know what to think.  There are good and bad things going on at the same time. I do miss the energy that I seemed to have thru January and February.  I go back to clinic on Tuesday and will likely start my week of Vidaza chemo then.  I think the plan is to skip doing a DLI this month and to then see where I am at after my next biopsy in about a month. 

Brant and the kids have been so great as I have been spending more time on the sofa and have stolen Katie's electric blanket.  Max the cat really likes it too.  I enjoy being able to see the kids off to school in the morning and having dinner together most nights.  So even though I don't feel my best, I still love being home.

Could it be.... a few new cells??

Sorry to be so long between posts, but I am sure you all understand that being at home means there are lots more fun things to do and less medical stuff going on. This is a good thing!  I received my brothers cells on Wed the 19th.  They were fresh from his transfusion the day before so I didn't stink with the preservative.  A fact that Brant and the kids appreciated. It was sad to see my brother leave, but he left a big part of himself behind!!  It took an extra day for him to get home, just like John, but he is safely back with his family and enjoying that warm Australian sunshine.

Since the transfusion of Tcells and stem cells (I got both), I have been up to Richmond on Sat the 22nd (got blood and platelets) and Tuesday the 25th.  I am following the normal drop in my counts that I do after Vidaza..  On Tuesday, my platelets were at 17 which is above 10 where they keep me, and so they did not give me a transfusion - surprising.  I had planned to get a transfusion on Thursday here locally knowing that the 17 number would drop quickly.  But then the doctors in Richmond decided they wanted to see me there on Friday (today) to see what my counts were doing. So I stretched it out one more day wondering how low my counts had gotten.

This morning I woke up not feeling so good, but headed up to Richmond with my sister.  I didn't sleep well last night and was tired.  Plus I have had a lot of achiness in my legs and hips.  We are hoping this is engraftment of George's stem cells and not the flu!!  After sitting there and feeling so blah, thinking my platelet count was down to 6, you can imagine how shocked I was when they said my platelets were at 33 - almost double from Tuesday.  My hemoglobin has gone up slightly, too, from 8.7 to 8.8.  My white blood cells are still lagging and stayed at 0.5, but at least they didn't drop down to 0.3 like they have the last few months.  So this is very exciting.  It would appear that I am making blood cells on my own!  Go George's stem cells. Unfortunately,  I still feel pretty yucky today and have mostly napped and lounged around watching TV.  I am hoping it is just one of those off days and that my energy will be back tomorrow.

So I turned 45 earlier this week.  Each day is special but it did feel great to celebrate a birthday.  It was exactly 10 months after I was first admitted at VCU for leukemia. At times it has felt so awful and bleak, but now I am so thankful to be where we are and feeling as good as I do.  Until I am in remission, my goal is to be the healthiest leukemia person around!

Good News...Good News!

We are happy to report that we got some good news yesterday while up in Richmond.  Brant took the day off to drive George and me to Richmond for the day.  George did his collection of cells while I got some platelets.  Brant and I met with the doctor about the biopsy results. My bone marrow is still very empty, but there were less than 5% blasts in the bone marrow that they could sample.  In November I was at 25%-30% blasts. There is still evidence of the disease in the more sensitive FISH and cytogenetic tests, but there were many less genetic mutations than seen previously. So it appears that the Vidaza and my brother's Tcells (in the DLI doses) have been eating away at the leukemia. 

Of course, there is still the problem that my bone marrow is very empty - most likely because of the leukemia and the chemo. George's transplant stem cells just never got a chance to take hold and grow. I have been getting DLI boosts the last few months, but these are mostly Tcells (the ones that attack leukemia) and they do not populate the marrow.  So the doctors decided to collect some stem cells in addition to the Tcells while George is here. He did a great job and wound up staying overnight in Richmond to collect a second day. Apparently I have a lot of good stuff available now!! I can't believe George will be flying home on Friday, it seems like he just got here.

Tomorrow I will head back up to Richmond and get a transfusion of the stem cells.  I think I will get some Tcells as well (the DLI) but I am just not sure what the protocol will be.  The doctors seem to be talking a lot and making the plan as they go.....I pray for them nightly that God provides them great discernment! This will be like a mini transplant, but since my system is almost 100% George right now, I don't have to do any of the chemo or immunosuppression to wipe out my system.

I better get off to bed and get ready for tomorrow.  Please continue to send prayers and thoughts my way.  I am so thankful for what God has done so far, but we still have a ways to go.  So we keep on fighting.....one day at a time! 

George is Here!!!

I guess this is a little late news since he arrived last Tuesday night.  It was a little dicey for him getting across the US ahead of the big snowstorm.  His connection thru Atlanta was cancelled but he was re-routed thru Detroit and stayed on schedule.  He made it up to Richmond on Wednesday to get his pre-testing done and drove back with Dad just as the snow was starting here in Hampton Roads.  He quickly made a snowman before it melted to Skype to his kids.  They are a little jealous - not much snow in Australia.

Mom & I finished up the week in Richmond without much trouble.  I had a few days that I felt kind of wiped out but most days I felt pretty good and even used the treadmill at the Hospitality House.  We were both really happy to get home Thursday afternoon, especially since the weather in Richmond was snowy.  Is it just me or all we all ready for winter to be over!?!?!

It was nice to be home for Valentine's Day.  We had a great family dinner and then realized we no longer can agree on a family movie to watch together......sigh...the problems of kids growing up!  Today we had a family meal over at Mom & Dad's to visit with them and George and Ruth.  You can see my hair is coming in quite a bit.  Dr. Chung teased that more of George's stem cells landed in my hair follicles than my bone marrow.....

My blood counts continued to do really well over the last week but I have a feeling they are dropping now with the effects of the Vidaza.  I will be headed up to Richmond on Monday for labs and George will do his T-cell collection.  Because my bone marrow is so empty they have decided to try to collect some more stem cells at the same time.  That means George has to get shots again, two a day from Friday thru Sunday......  He is not real happy about that but is such a trooper.  Mom gets to give them to him so he doesn't have to drive to Richmond each day.  He thinks she has a bit of a grin when she jabs him, but I doubt it.

We are hoping for some good news next week from the doctors and for another three weeks of me being able to be at home with only day trips to Richmond. We have had so many good days lately and we are so thankful. You never know what tomorrow is going to bring, but we pray for lots more days like these.

Back at "The House"

Mom and I checked into the Hospitality House yesterday for a week of Vidaza chemo treatments.  It was hard to leave home....I was there for three weeks and mostly healthy.  We are starting to feel like a normal family again, except for minor things like I can't drive or go out to public places very much. But hopefully all will go smoothly and I will be back home next Thursday for another three weeks.

I have been very tired and achy yesterday and today.  It could be the chemo. It could be not being at home. A little Tylenol seems to help.   I secretly hope it is my bone marrow getting busy making cells.  Speaking of that, my counts have been doing a little better this past week.  I haven't had platelets since Monday.  That is a record since I usually need them every other day.  I got blood yesterday, but that was the first time in 12 days, and usually I am at a week for blood.  It is depressing that the chemo will just beat the poor little cells back down in a few weeks, but hopefully it is slowly wiping out leukemia as well.

My biopsy on Monday went pretty well.  It was one on the less painful ones.  They still struggled to get much material since my bone marrow is sparse.  But I am hopeful they got enough to have meaningful information.  We won't have results for almost two weeks, because the cytogenetics take the longest to get back but are very important.  So we will just wait until there is a full picture to discuss it with our medical team.

I better get back to my Olympic coverage - mom and I have something we can both watch!! We are settled into a different room, that is of course basically the same as the last one.  Mom gets the joy of cooking on a hot plate or in the microwave for a week.  But we have it pretty good.  Tonight a volunteer group from a local church brought a delicious dinner so no cooking was needed!

Thanks for keeping up with me.

Just a Quick Update

I have enjoyed a second full week at home (with trips to Richmond of course).  Last  Monday, after my clinic visit, Mom & I officially moved out of the Hospitality House.  We have been in that room since August. But since I am spending more nights at home now, and very few in Richmond, it didn't make sense to keep the room.  I can't believe how much stuff we had packed in there!

We got about 10-11 inches of snow here in Chesapeake Tuesday night and woke up to a winter wonderland Wednesday.  Fortunately we have a 4 wheel drive vehicle and haven't had any problems getting around.  VDOT did an awesome job of keeping the main interstates cleared and I was happy to hear that equipment and people came in to help from my District up in Salem.  The kids have not been to school in almost a week.  I think this coming Monday will be a brutal wake-up.  My brother George is really hoping that all this winter stuff will move out before he arrives.  I am sure it will be hard to leave his warm beaches and family Down Under to get a brutal blast of cold in Hampton Roads.

My energy level has continued to be good.  I have a day or two that I don't feel as good, and then the next day I feel fine - no rhyme or reason.  I just try to roll with whatever the day brings me.  My counts have dropped pretty low this last week after having a rebound in early January.  It is the normal cycle from the chemo. I am certainly only staying at home or going to clinic.  No crowds for me.

Next up is a biopsy on Monday (but I won't get results for a week or two) and then Mom and I will check back in to the HH next Friday for my fifth round of Vidaza chemo (seven days). I am anxious to hear how the treatments are going.  This will be the first update on my progress since November.  Prayers and good thoughts are certainly needed the next few weeks. 

Snow Daze

I did make it home last Friday after leaving the hospital for my DLI boost.  I don't know what is in George's little bag of cells, but for one day I have enough energy to feel like a normal human being!!  We had a great day together on Saturday after being apart for eight days.  We even got to celebrate Christmas once again since we had missed seeing Brant's dad over the holidays.  Although the "high" doesn't last, I have to say I have been feeling very good over the last week.  And I have been home every night!

Brant drove me up to clinic on Sunday and I didn't need anything!  First time in forever.  But unfortunately I think the last chemo run is kicking in, and by my clinic visit on Tuesday my platelets had dropped off quite a bit.  On Thursday I went to the local oncologist and infusion clinic to get platelets and blood.  It wasn't the smoothest experience, but I think it is just getting the kinks out.  It would be nice to go to Richmond once per week and do clinic down here twice a week when I am just doing transfusions.

So January has definitely felt a lot better than December.  I hope it is a good sign that the Vidaza/DLI combo is working.  George has his flights booked for a two week visit in February to donate some more of those DLI cells.  He is so awesome.  My biopsy in February will hopefully give us some good information on what the leukemia is doing.

The doctor at Duke encouraged me to have a regular exercise routine to build my strength (especially cardio).  While I was at the Hospitality House for the week I used their treadmill each day.  Here at home I figure I am up and down the steps enough, but would like it to warm up a little so I could walk outside.

We have had snow on the ground since Tuesday night.  Dad got me home from clinic on Tuesday just before it arrived!!  The kids have had two snow days this week and have enjoyed the extra sleep.  And I have enjoyed the extra time with them.  We just keep taking it one day at a time and I am thankful that lately the days have felt pretty good and the bad thoughts have mostly stayed away.  Keep praying!  God can do miracles!

TGIF

It has been a long week in Richmond going to clinic each day for my Vidasa chemo treatments. But mom and I have held up well and are looking forward to the weekend. I am typing this from the hospital room since I just had my DLI dose (Booster cells from George). They admit you into the hospital to do the procedure but you don't stay overnight. Right now I am waiting on a bag of platelets and then hopefully mom & I will be headed home for the weekend. :) :)

Next up, it is three weeks of recovery from the chemo followed by a bone marrow biopsy to see if we are making any progress. I am praying that this treatment will show some improvements and we can continue on this course for a while. Since that was my last bag of cells, it looks like George will be headed over again in February to donate some more "goods". My counts have showed some positive trends in the last two weeks. Nothing earth shattering, but my platelets and blood are lasting longer between transfusions and my white count is trying to creep out of the cellar. Hopefully this trend will continue.

Not much else new here. Thanks again for all the support.

Tour de Cancer Centers

I have been doing pretty well since getting out of the hospital on Jan 2nd. We stayed in Richmond after my discharge to make sure my cold was improving. If I went home I knew I would be exposed to more things and wouldn't be able to sit still. Remember how I said those IV antibiotic balls were so cool? Well they got old really quickly since I had to do 5 of them a day. It seemed like something was always needing to be taken out of the fridge, hooked up, disconnected and flushed, and if I needed to go somewhere....packing up was a task! It kind of reminded me of when you have a newborn and there is so much to do all the time and you aren't 100% sure of what you are doing! I finished those off on Wednesday and was switched to just a pill antibiotic for prevention purposes. So far my cold symptoms have continued somewhat, but no fevers or sinusitis.

This past week Brant and I went to both Johns Hopkins and Duke. It was a lot of driving and two nights in hotels that didn't help with getting rid of my cold. Brant is a great driver and we were blessed with little traffic and good weather (but cold!!!). Both facilities were new and very attractive (sad there is so much money in cancer.....). Both doctors we met with were very good and spent a good deal of time talking with us. It was good to do this type of investigation while I am still under a treatment plan (Vidaza). Both doctors said that Vidaza with DLIs is what I would be doing at their institutions. It is not uncommon for the blood counts to remain very low for quite a while and still end up having positive results. The 4-6 month range on this treatment plan is where they start making some decisions if it is working.

So our discussions were more based around what are the next options if Vidaza doesn't work. Both docs agreed that more toxic chemo isn't the best option for me even though that is what is readily available. Leukemia research is focusing on more targeted therapies and interrupting the cellular pathways of specific leukemia cells. It is very cool stuff, but unfortunately, most of it is in early development with mostly Phase 1 trials and maybe a few Phase 2 trials. It is nice to know we have some options for down the road, but we didn't hear anything that would have us change course right now.

In between days at the cancer centers I was at clinic or at home. Ruth took me up one day, and Dad did another. Mom decided to share my cold with me and took the week off to stay home and rest. It was nice to be home a few nights and to see the kids. Ruth moved in as Aunt Nanny and made sure there was some stability for the kids as we came and went. It helped a lot. Thanks!!! This morning Mom & I packed up for a week in Richmond. I started Round 4 of Vidaza today and will have a bone marrow biopsy in early February to see how things are going. I am hoping I can spend most of the three week Vidaza-recovery time at home, but I know better than to plan on it! We are just taking it one day at a time and trying to be as healthy & germ-free as possible.

Released!!!

They let me leave today! I had a great nurse on Monday night, they are all good, but she was determined to get me a good night rest with no pain. Things seemed to turn the corner after that, and I woke up feeling good with much less pain. I am still coughing and blowing my nose a lot, but feel much better. The fevers are also a concern, but they have stayed away for the last 36 hours. So they let me go down the street to the Hospitality House. They checked me for just about everything, but the main concern was fungal infections. They are hard to treat and can appear when you have no immune system. So far, everything looks good. Let's just hope it is an expensive cold.

In addition to a new antifungal pill, I am on two IV antibiotics for about 5 more days. They are these little balls of medicine that when you attach one to your port, the medicine gets sucked in over about 45 mins. I think it is a pretty slick way to do IV meds at home without a nurse or Gertrude(IV pole). Sorry if I mentioned that before. I am also now a firm believer in nasal rinses with sterile saline. It is kinda awkward and takes a little practice, but I wonder how many head colds I could have relieved doing that! And the hospital has the perfect sized syringes and saline that doesn't burn.

So Happy New Year! Brant and I had probably our oddest one yet. He drove up to Richmond and spent the night in the hospital with me. I'm not sure how much rest he got, but it was nice to greet 2014 with him. The care partner brought us some chocolate milkshakes and mom had left us two little party favors. Thanks, Ruth, for doing New Years Eve with our kids. It was disappointing to lose the last week of the holidays to this illness, but I was where I needed to be.

Next week will be a big one for us. We have consults at both Johns Hopkins and Duke. We ask for your prayers - safety on the roads, that my sinusitis will continue to improve and I will have strength, that the doctors will have good options, and that Brant and I will have God's hand upon us as we decide where the path will lead next.

Love you all.