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.