Friday, December 30, 2011

Day 9

Christmas Eve Dinner - That's Renee in the window :-)

Hello Friends, today is day 9, which has no particular significance....just time for an update.  There's not a lot to report - nothing moving on the blood count radar yet - I have essentially zero white cells, as my immune system has been effectively taken out by the chemo.  I am getting blood and platelets as needed, again very routine around here.  My low counts make me very tired, so I need extra sleep.  The chemo side effects have not been too bad, I have a couple of sores in my mouth and occasionally I feel a little queasy but we should be getting near the end of that shortly.  The main medical / comfort issue is my sinuses, which continue to be blocked, causing pain and trouble breathing (through my nose) at night......I had similar symptoms after hyper cvad treatments  but they were not as severe and I didn't get headaches.  So the docs are working that problem.  Well, my breakfast just arrived so I will leave it there for today.  We are starting to think that maybe my new stem cells will kick in within the next week or so......appreciate your prayers in that regard......Happy New Year to all.......Dan

Sunday, December 25, 2011

Day 4 Update

Today after the Transplant Floor "Pole Parade"
 Merry Christmas, everyone!  We have had a very good time here at MD Anderson - making the most out of this most unusual Yuletide season.  Last night, Renee organized a gathering in the lounge here complete with appetizers, wine (not for me!), gifts to open, and a dinner of chicken pot pie from Costco.  We took over a corner of the lounge and got on with it!  Renee's parents joined the four of us and made it a special occasion.  We even had cheesecake for dessert.  Yum!

Kenyon spent the night here with me last night and Renee and Rachel made a breakfast casserole and brought it over here this morning....we had another gift opening time after that and have been talking with family on the phone and watching Christmas movies since then.  Bob and Vaun returned to Raleigh today.
The sympathy card pays off big-time for Dan
 Medically, I have been stable - I have some minor issues but my doctor says I'm doing very well and to keep it up.  I'm on anti-nausea drugs and eating pretty well, walking 3 miles a day on the floor.  No intense workouts for the time being ;-).  I've gotten through one week of post-chemo side effects and will have at least one more week - if it's no worse than this week, I will be very fortunate.  Of course we are anticipating and praying for my new stem cells to wake up and start producing blood cells, but it's a little too early for that yet.  Renee and I wish you and yours joy and peace this blessed Christmas season.   

Dan's World - Party on, Dan!  Excellent!

Wednesday, December 21, 2011

Hello Friends, just a quick update on "Day Zero".....all went well, the transplant is very  much like a blood transfusion - it was done with two 'bags' of cells, one late morning and one around 2:30-4:00.  There were no side effects....but the side effects from the chemo continue and they could worsen - so far they have not been bad but I was very tired today and spent a lot of time in the bed.  I did manage to get out twice for laps around the floor.  The next milestone will be 'engraftment', which I think I have mentioned before - that could take anywhere from 7 days to 20+ days, so we have some time to wait on the Lord.  Merry Christmas to all....Christ is Born!!  Dan

PS there's a picture on my facebook page from today  :-) 

Monday, December 19, 2011

Crunch Time......

The Nurse Assignment board for floor 11, NE Pod.  I blocked the other patients' names.
Ho! Ho! Ho!  Merry Christmas to is my last day of chemo, which means I will start feeling very yukky very soon - I am already on anti-nausea meds 3 times a day - fortunately it is very effective, so I don't feel really sick, just what I call a little 'green'.  It will get worse over the next several days, my docs and nurses promise.

Our floor has a little exercise room that I am taking advantage of while I feel well enough.

Since we last "talked", Laure left to go back home on Friday and had a great reunion with her family on Long Island - bless her heart, even though she was so homesick, she felt badly for "leaving me" just as I start the long and difficult part of my trial. 

As for today's pictures, I thought I would show you a little bit of my hospital home away from home (apartment) from home (Raleigh) .  The nurse board shows the patients and nurse assignments for our pod, which is one of 4 pods on this all-SCT (stem cell transplant) floor - so there are 56 patients on the floor and it is pretty much always full.  There is also an overflow floor where there are usually another 10-30 SCT patients - so typically there are anywhere from 70 to 85 SCT patients here at MD Anderson, which makes it the largest SCT facility in the US....not sure about the world, but I believe it is.

On the last 3 mornings, I have bothered the nurses to open up the gym room at about 8 am - only security or a physical trainer can open it - and someone (a nurse or an assistant nurse) - has to be in there with me at all times, but they are  very supportive of maintaining physical fitness and activity levels - my nurse yesterday said that in a couple of days I will need to be coaxed out of bed to get walking laps around the floor because I will be sick and exhausted.

One corner of my room
   As you can see above, we've added some homey touches to the room - Renee got me the mini-Christmas tree and decorated it;  Laure gave me the 3 framed photos (from left to right), and Renee's parents brought the rightmost frame, my digital frame, along with them in Renee's car.  Bob and Vaun arrived here on Saturday after a 1200 mile drive in Renee's car - so now we have our own car and returned the rental.  Also, Rachel arrived yesterday and spent the evening here with was GREAT to see her again;  she will be here on her Christmas break until January 4.  Kenyon will arrive here on the 23rd, so while this will be a very unique Christmas, we will be together and that's what is important. 

Medically, this is my last day of chemo and I am starting to feel lousy.  I just got my blood counts and my white count crashed in the last 24 hours, from 2,000 to 400, and my neutrophils are zero - so now is the time to be hyper-vigilant about infection, as I am essentially defenseless.  This is all exactly as the procedure is designed.  Tomorrow is a "rest day", ie no chemo, and Wednesday the 21st is day zero, a.k.a. transplant day, a.k.a. infusion day.  What I can expect over the next three weeks is a week or so of harsh chemo side effects, including nausea and mouth sores, and a couple to three weeks of very low blood counts which will cause extreme fatigue.  Once I have Laure's stem cells infused, there is a waiting game for her cells to "ingraft", which will be indicated by the beginning of the recovery of my counts.  This is estimted to take 2 to 3 weeks from day zero.  The ingraftment is the #1 prayer request.  If the new cells do not ingraft by day 28, the transplant is considered to have failed and we will likely begin again with another attempt.  That is unlikely, but as you know, other unlikely things have happened:  i.e., most recently, Laure's collection process taking 10 days instead of 2. 

Second on the prayer request list is for little to no graft-versus-host-disease (GVHD), which is when the new immune system attacks healthy parts of the recipient's body that it shouldn't, like the skin or liver.  It can be mild or severe, even fatal in rare cases.  The third request is to remain infection-free, fourth is for side effects being minimal or at least better than advertised.  Please don't forget Renee and the rest of my family that is here in your prayers.

We continue to trust the Lord.  We had a heart to heart with Rachel yesterday evening that was one of those unforgettable discussions where Rachel declared her faith that everything was going to be OK, even though she knows that there is no guarantee of the success of the treatment.  I said that there is only one way that I will not make it through this process alive in body - ONE WAY - and that is if the Lord wants me in Glory with Him.  We all agreed again that I cannot lose this battle, and even that the phraseology 'so and so lost their battle with cancer' is inappropriate in light of the promise of eternal life, the victory over death that Christ won for us on the Cross and sealed with His resurrection on the third day.  Victory - is all that is in my future - victory over cancer or victory over death.  Halelujah!

Forgive me for such a long post;  I hope you are still with me.  All the Rookers, Moores, DiCiccos, McKennas, and McElraths send you warm wishes for a blessed and joyous Christmas and Holiday season.  Please remember us in your prayers as you have been doing so faithfully and wonderfully.  Til next time - Dan and Family

Thursday, December 15, 2011

Phase II Underway

Laure and I with her 5th and Final Collection on Tuesday Afternoon

 Hello Friends, I was just poking around on the blog utility and for the first time saw some data on "page views"....kind of interesting - it said there were 171 page views yesterday.  I was impressed! 

Renee has divided our stay in Houston into 3 phases - Phase I was the time prior to my admission to the hospital, Phase II is the period when I am an inpatient, and Phase III is the time after my discharge from the hospital, while still here as an outpatient.

So using that nomenclature, we have entered Phase II !!  Laure was able to donate again on Tuesday and we learned early Wednesday that the count from that donation was 1.22 million cells (per kg), bringing the 5 session total to exactly 4.00 million cells.  Since my transplant coordinator had tentatively scheduled my hospital admission and associated activities for Wednesday, everything was set and I was admitted yesterday evening at about 6:30 pm. 

Laure is still here and will be flying home tomorrow morning.  She ended up being here in Houston for 17 days and travels home on her 18th day.  I cannot tell you how grateful I am, and Renee is, for her commitment and patience through this process - of course she says that's silly, she never even gave it a second thought.....but still, I am so grateful.  Laure observed yesterday that she and I have not spent this much time together in our adult lives - the closest thing we can remember to spending this much time together is one of those 2 week station-wagon vacations out west when we were in our early teens.  I believe that the Lord had a good reason for this week-long delay, and it could have been just that - it's been a blessing to have so much time together, and honestly, there have been no cross words, arguments, or any rancor at all - certainly some fatigue and anxiety during the early part of the collection process, but once her stem cells lost their shyness, the enthusiasm returned. 

This post is getting longer than I intended, so let me wrap it up - I'll say more about the hospital tomorrow or Saturday.  You can see a pic of me in my room below.  Today is "day minus 6", and also my first day of chemo as we count down to transplant day on December 21 ("day zero").  I still feel fine and remain remarkably busy.  We wish you and yours a blessed and joyous Holiday season - we will be worshiping our Heavenly Father for His amazing plan of redemption through His son Jesus - Emmanuel, God with Us.

Wishing you Peace, Hope, and Love - Dan, Renee, and Laure

Large man in a small but festive hat

Tuesday, December 13, 2011

A Good Day in the Apheresis Center

My Nephew John DiCicco (Jill's son) and Finn, Rice Lake, Wisconsin, August 2011

Greetings Friends!  Another quick update - Laure's collection yesterday (#4 for those of you keeping score at home) yielded 1.14 MILLION stem cells - yee haw!!  That brought the total to about 2.8 million, just a few hundred thousand short of the goal.  The other good news from yesterday was that her platelets had boomed over the weekend, to 104,000, which resulted in her being able to donate again today, rather than have a rest day(s)s in between.  So at the moment, we are in the apheresis room for what should be the last time.  Dr. Korbling was just here to see us and he is confident of that as well. 

That means that Laure should be able to fly home on Thursday after 17 days in Houston and 5 stem cell collection procedures BLESS HER HEART!!  For me, it means that I can be admitted to the hospital tomorrow afternoon and get down to business with a one week delay;  chemo would start on the 15th (thursday) and "day zero", transplant day, would be the 21st.

That's all for now, I will post again when all this is confirmed tomorrow.  All praise and honor and glory to our heavenly Father and our Lord Jesus Christ - He is more than able!  Dan, Renee, Laure :-)

Monday, December 12, 2011

Steady Progress

Descending from Mt. Clark, Yosemite, 2004
Hi friends, I know it's been 5 or 6 days since my last post, so a quick update....Laure had rest days on Wednesday and Thursday while her platelets recovered;  Friday she donated 700,000 stem cells, bringing our 3 session total to about 1.7 million.  We need a minimum of 3 million, so we are hopeful that she will hit the magic number in 2 more sessions.  There is a chance at any point that she will "pop" and go to 1, 2, or 3 million cells in a single session, or we could just keep seeing this slow, steady pace......we're in the hospital right now and just started session 4.  We are enjoying some of the interesting cuisine of Houston and we've had some great meals in the apartment as well.  Laure is getting nupagen shots twice a day, so each day starts with a blood draw (to check platelet count) and shots.....then we have to come back in the afternoon for shots again.  To say the least, Laure is a TROOPER.  While this phase has had its frustrations, we continue to wait on the Lord and seek His peace and His joy as Christmas approaches.  I will update the blog again when we have the results from today's collection.  Dan

Wednesday, December 7, 2011

Apheresis non Rapidium

Laure making a generous donation

Since Friday, our main focus has been the stem cell collection process, of which Laure is the star.  She has her "own" doc in the transplant clinic, a gentleman of German extraction named Dr. Korbling.  The process is called apheresis.  So my little joke in the title of today's post indicates that the process is not moving along at a rapid pace.  It normally takes 1-3 days to collect the needed stem cells, but it looks like we will be at it for several more days and likely into next week.

The process begins with Laure getting shots of a drug called Nupagen, which causes the bone marrow to push stem cells out into the bloodstream.  After 3 days of Nupagen shots, the first collection is done;  for us that was Monday.  The goal is 3 to 4 million stem cells per kg of bodyweight (of the recipient), and the first day produced only 300,000 cells per kg.  Laure was back in there on Tuesday afternoon and they got another 600,000 we still have at least 2 million cells to go - the docs remain confident that it's just a matter of time.  There is another regulating factor - each time they collect, platelets are also collected (the technology cannot remove all platelets from the collected stem cells) and therefore reduced - if the donor's platelet count goes below 70,000, we have to pause and let her counts come back up - so today is one of those days where we are waiting for Laure to gin up some more platelets.  The next several days will be a combination of more shots, more collections, and some resting/waiting for platelet counts to come back up......

My transplant therefore will not happen on the schedule I spoke of on Friday; as I may have said before, they will not admit me to the hospital (and therefore start chemo) until we get to 3 million stem cells per kg from Laure - our best guess is that we may move everything out a week, but it's impossible to know for sure. 

The apheresis process involves establishing a blood circuit where blood comes out on an IV in one arm, goes through a machine (centrifuge) that separates and stores the stem cells, then sends the blood back into the body via another IV in the opposite arm - during the course of a 4 hour procedure, all of Laure's blood goes through the machine 3 times.  At any given moment, there is about a cup of blood out of her body (tubes, machine, etc).

Obviously we are all a little frustrated and impatient, but trying to give this all to God and continue to trust Him, and look for the little blessings that He continues to shower us with.  And of course the BIG blessings,  like we had on Friday.  Another big blessing is that I continue to feel great and have been able to work out every day I've been here except one.

Prayer needs are for Laure's Nupagen shots to "kick in" and start cranking out stem cells- it's possible that we could get through this in one more collection, i.e., have a surge in production.  Also, that Laure's platelets would replenish rapidly.  Thanks everyone for your continued care, concern, love, and prayers.

Dan, Renee, and Laure

Friday, December 2, 2011

Great Ending to the Week

How cool is this?  Laure got to meet Dr. Keating with me today

2 Samuel 22:1-3
“The Lord is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield and the horn of my salvation."'s going to be hard to summarize the events of the past few days - I think I will make those of you who like detail happy - sorry to the rest of you :-)  When we met with Dr. Hosing on Wednesday, she was not nearly as sure that we would be going to transplant as we we led to believe on Tuesday.  She actually put the likelihood at 50/50, which was quite a shock - we got this news early in the day, so we were walking around in a bit of a fog for the rest of the day.....they promised to call us on Thursday morning after Dr. Hosing met with her colleagues and formed a consensus.  We got that call at about noon yesterday and the answer was that they were OK to proceed, but they wanted Dr. Keating's opinion as well - which is why I did not update the blog yesterday - as I said to Renee, Dr. Keating has surprised us a few times, so we didn't want to assume anything.

So we met with Dr. Keating this morning, and he just has a way of making everyone feel great, and he did it again.  He had a few bits of new and very good news - the first thing he said was that he supported the transplant option, so we finally had the last piece of the answer we thought we would have on Tuesday.  But, he also told me that my PET scan - a test which identifies tumorous tissue based on glucose absorption - was clean.  Which meant that the tumor that we have been so focused on, while it's still there, it's inactive, or dormant, and could even be scar tissue at this point - so it's less of a concern than we thought earlier in the week.  Dr. Keating also said that the percent of leukemic cells in my bone marrow had decreased from 52% in late September to 31% this week - this was a fortunate by-product of the 2 rounds of hyper CVAD - Keating called this 'minimal disease', which is what you want going into a transplant (if you're not in a complete remission).

So all in all, it has been another roller coaster week, but we are ending on a mountaintop.  Dr. Hosing and Dr. Keating both put the finishing touches on it today by telling me that with these most recent test results, they both feel I still have a 50% shot at being cured by the transplant.  The schedule for the next couple weeks is that Laure will have her stem cells collected on the 5th and 6th;  I will be admitted to the hospital on the afternoon of the 7th;  my chemo regimen will run from the 8th through the 13th;  and the transplant will be on the 14th (henceforth referred to as "day zero").

And now, for those of you who are still with me, a real treat - my first guest blogger, my sister Laure: 

A word from the "donor"- It has been a whirlwind week here with Dan and Renee. But, what a great hospital, and what great doctors!  We are so blessed to have the best care in the world.  Dr. Keating lived up to all expectations.  He is so warm, and funny.  Dan said, something that included, "if you cure me...." and Dr. Keating immediately interrupted and said "WHEN I cure you!!....."  and this not in any way and egocentric remark- he is just incredible. So,  I am thankful to be here and share this with them, and to play the part that God has given me to play- with Joy! 

Thanks Laure!  Apart from all the medical stuff, it's just been a blessing to 'hang out' together this week.

As always, we are borne along in this journey by your prayers, texts, phone calls, cards, love....please keep them coming.....Dan, Renee, and Laure  :-)