Thursday, December 30, 2010

Christmas Update

Hello from sunny Hollis, Maine.  I am still on the mend.  Feeling OK, just still loosing weight due to the fact I am not eating much.

We had a great Christmas.  The kids are at the perfect age.  The grandparents went a bit overboard, but that is to be expected.  The kids had a blast opening presents  (for over 2 hours).

Have a Happy New Year everyone!!


Tuesday, December 21, 2010

Day 39

Feeling good at day 39.  Tomorrow we head to Boston for our weekly checkup.  Our first appointment is not until 10AM.  While we are down there this time, they will also be removing my last Hickman line from my chest.  Not sure if you remember, but they removed the first one when I was still in the hospital with no sedation.  Screaming and vulgarities were involved.  Our nurse has assured us that there will be pain meds and sedation this time around.

I am eating a bit more food now.  I have started having smoothies and Carnation shakes.   Giving me some much needed calories.  I have been walking 15 minutes a couple of times a day.  Next week, I would like to add in a slow jog and get the bike trainer setup.

Hope everyone has a great holiday this year!  It definitely is a special Christmas this year at the Davis household.  We are ready to put 2010 in the history books.

Thursday, December 16, 2010

Day 34 Post Transplant

Well, we are at day 34.  So far, the donors immune system has done a nice job setting up shop within my body.  My white counts are up are and my new immune system is growing.  We head down to Boston tomorrow (Friday) for a check up and also a followup with the gallbladder surgeon.  They will also be doing a test tomorrow that measures my immune system.  It will tell us what percentage of my immune systems is the new donors system and what part is left over from my old crappy, defective immune system.  We are shooting for a high percentage of it being my new immune system.  It will take a couple weeks to get those results back.

The biggest difficulty I have right now is that all the chemo and radiation before the transplant wiped out my taste buds.  Nothing tastes good.  I am down to Peanut Buttercup Cereal, PB&J sandwiches (they are tough to swallow) and chocolate pop tarts.  As  result, I am stuck at 160lbs.  Since I am not eating much, I do not have a lot of energy.  Since I do not have a lot of energy, I cannot exercise and get stronger.  It is very very frustrating.  They say this will eventually pass.  I hope it passes sooner rather than later.

For those of you that have asked about sending me baked goods, I cannot have anything "homemade" for the first first 100 days after transplant.  Just about the worst time of year to be on that restriction!

Friday, December 10, 2010

First Check Up Appointment in Boston Today

Today, we had the first of many follow up appointments in Boston.  These are weekly appointments at Dana Farber to check on my progress.  Today's appointment was at 9:00AM.  To make things easier, the kids spent the night at Reggie and Vicki's.  We were out of the house by 6:15AM.  Crystal had packed me snacks because I cannot eat food from restaurants for the next few months.  Food tastes terrible right now.  The radiation pretty much wiped out my taste buds.  I am struggling to get 1000 calories a day into my system.  As a result, I only weigh about 160 lbs.

We hit a bit of traffic, but ended up getting there around 8:40.  They drew a bunch of blood and then we waited to speak with the nurse practitioner.  She went over my blood counts and said that things looked great.  I am right where I should be on the progress meter.  I am at day 28.  Meaning I am 28 days past transplant.  We also found out that it is OK to have adult visitors at the house as long as they are not sick and have not been around anyone sick.

Overall, I am feeling OK.  It is great to be home.  I actually drove today and picked up the kids.  It was nice to feel "normal" and be part of society again.  The nurse told us today my taste buds may take several weeks/months to redevelop.  Until that happens, I need to just keep trying different foods until something clicks.

Also Crystal and I wanted to also thank everyone who was involved with and who generously donated towards the benefit being held at the Gold Room tonight. 

Thursday, December 9, 2010

HURT 100 - Race for Davis

Crystal works with a guy named Brendan Gilpatrick.  In January, he is running in a race called the HURT 100.  It is a 100 mile endurance run in Oahu, Hawaii.  In an effort to help our family, he has setup a donation page.  Please check out Brendan's page.

Wednesday, December 8, 2010

Home at Last, Home at Last

First I must say it was amazing to sleep in my own bed last night. No nurses, weird noise, other patients, call bells, air filters or vital checks. Just silence and a comfy bed.

It was also amazing to see the kids. We did not tell the kids I was coming home. Crystal went to pick them up and I was lying on the couch. I watched them come in and take hats and coats off. Paige walked into the living room and said” hi daddy”, then ” HI DADDY!!!!!!” The Nolan came running in. It was a tear jerker moment. But then again, everything is lately for me.

Food is tasting good. I am down to 160. I was 184 when I went in. I ate very well at home today. Things still taste off, but not terrible. I think it will only take a week or two to get back to weight. I would like to get to 170 or so and hold there. I then need to build some muscle mass back.

I am basically on quarantine for the next couple of months. I do not need to wear a mask at the house. We are not to have visitors for the next month. If someone does stop by, they need to mask and glove up. If the kids start to show the first sign of illness, they will need to mask up at the house and so will I. I need to take roughly 10- 12 pills each day. I take my temp twice a day. If I spike over 100.5, I may need to be re-admitted due to the fact it could be due to some sort of infection. We have a checkup at least once a week in Boston for the next couple of months.

Looking back over the posts over the last month, there are some parts I do not remember. I can truly say, it was the toughest and worst month of my life. I missed my family, friends and had some pretty low, low, low days. There were times I was convinced that I was not returning to Maine. I was not going to be leaving the hospital period. That is a terrible feeling. What kept me going were all the well wishes and positive messages sent via e-mail, over the blog, via phone etc. I cannot thank each of you enough for everything you have done. All of you saved my life on several levels.

We still have a tough battle ahead, but I truly feel the worst is behind us. Several people have said I have a guardian angel and I am starting to believe that. Hopefully, the angel can take a break for a while, kick back and enjoy a Shipyard Prelude over the holidays :)

Tuesday, December 7, 2010

Hello Hollis!!!!!!!! Just Released.

Got released today. I cannot explain how happy I am. I will update the blog over the next few days with the details of my Boston stay.

Monday, December 6, 2010

Still in Boston

Right now, they are waiting for digestive track to "firm up" a bit before they are ready to send me home. I am down to 160 from 184.  Have walked a bit today and  everyday, but feel pretty beat up.

Ready to go home.  Today is day 31.  Ready to come home.  Could be anyday now.

Sunday, December 5, 2010

Boston Update

The removed galbladder is pissing me off.  Once things settle out, I should be able to come home.  Just giving me stgrange digestive issues they do no want to send me home with.

Hope all is well with all of you this week  I hope all of you people are getting their Christmas shopping done and not wasting time reading blogs!!

Friday, December 3, 2010

Galbladder update

Quick update. Feeling better after a couple of rough days. Mostly surgery pain . Muscle tissue healing and feeling better. Will update later in day on Friday after speaking with surgeons.