We're Home

We had a fantastic trip, but it's so great to be home.  On Tuesday, we met with Dr. Matasar and he suggested a new high-dose chemo treatment called Augmented ICE.   Because this new treatment can come with dreadful side effects and serious complications, we've decided to relocate to NYC to have Sam treated right at Memorial Sloan-Kettering Cancer Center.  Two rounds will be given over the course of a 3-4 day hospital stay with 3 weeks in between to recover.  Our options are running out so we are praying this will work. 

If all goes well, and they get Sam into remission (cancer free) we'll then face getting through a stem cell transplant.  They will not do the transplant if he's not in remission.  At this point, an autologous stem cell transplant (using Sam's own stem cells) has been taken off the table.  We're starting the process to have Rob and Charlotte tested to see if they're a good match, and if not, hopefully we'll find a match from an unrelated donor.  Many of you have offered to be donors (thank you!) and we're going to ask the doctor more questions about it.

Until then, we're NYC bound.  Possibly very soon.  If anyone knows someone who'll be vacating their Upper East Side apartment for the holidays please let us know.  Here are some pictures from the trip.  And it was smooth sailing through airport security with 103 oz of breast milk and my knitting needles!

 

jetblue

a walk through central park

tea and scones at alice's tea cup

getting checked out at weill cornell

stopping by the protest

the back end of the bull

While you continue to pray for Sam, please send up some prayers for Dr. William McGarry, Sam's oncologist, who has recently been diagnosed with advanced esophageal cancer.  He's a great man with a beautiful family and, of course, like Sam, doesn't deserve any of this.  

Cancer Doctors and Breast Milk

Between our upcoming trip to NYC and the small disaster area in our family room, it's been a little nuts around here.  Sam and I heard about a big lymphoma conference happening at the Waldorf-Astoria around the same time as our trip so I've been tracking down email addresses for doctors who'll be attending and sending them Sam's information.  We were amazed when we started getting replies and downright floored when our phone started ringing.  So far we've heard from experts at Mayo Clinic, Georgetown University Hospital, the National Cancer Institute, the University of Arizona and Weill Cornell Medical Center.  It's been great to get to communicate with these doctors and we've actually extended our stay to include an appointment with Dr. Rebecca Elstrom at Cornell.

As excited as we are to visit and talk to doctors, we are really anxious about being away from Jack.  This will be the first time we'll be separated for so long and so far.  Sam's been fussing over small details of the trip, and I'm starting to feel like a dairy cow trying to add to Jack's stockpile of milk in the freezer.  After our four day trip I'll be returning home with a pretty large stash of milk and I'm praying the TSA don't hassle us about it, especially after reading stories like this and this.  If you have any tips or advice please let me know.

We'll leave you with a photo of our family room courtesy of Dri-Rite and KB Homes.  One step closer to a wood floor!

 

Sloan-Kettering

We got the results back from Sam's ct scan.  Unfortunately, this type of chemo didn't work either.  We weren't completely surprised since Dr. McGarry had warned this may happen, but still disappointed.  We chose this type of chemo because it had fewer side effects, could be given outpatient over 1-2 days and had the best chances of preserving Sam's stem cells.  Our next options will come with harsher and potentially permanent side effects, require a 5-6 day hospital stay every few weeks and possibly damage his stem cells.  We have an appointment with Dr. Matasar at Sloan-Kettering in NYC next week to get one more opinion before we proceed.  Please keep our family in your prayers as we prepare to choose our next path.      

We're Home

Sam was discharged this afternoon.  He's feeling pretty sore, but he's in good spirits.  He'll be resting up and taking it easy for the rest of the week.

Here for one more night

Sam is recovering well, but his platelets are low so they're keeping him one more night. Another game night in the hospital. The orange jello has been ordered. Let's go Gators!!

Out of Surgery

Sam is out of surgery and doing OK.  They will be moving him up to the fourth floor soon, and the doctor said he'll probably be able to come home tomorrow.   

Sam's in the Hospital. again.

Sam has been admitted to Indian River Medical Center with appendicitis. He's going back for surgery shortly, and I'll update when he's out. Jack is with my mom, and I'm doing great thanks to a care package from Amelia and Judy Graves. Thanks ladies!

Friday Fun

Sam has his ct scan today to see if this type of chemo is working.  We should know something early next week.  We'd like to send out a huge thank you to everyone working hard to put on a benefit for us, especially Michael-Brianne and Jason Pressley for getting the ball rolling!  We've been completely blown away by the love and generosity of not just friends, family and our Greek families, but complete strangers as well.   And the timing could not have been more perfect.  If you're interested in attending the benefit you can find details here.

Have a great weekend! 

Cinnamon Vanilla Pears for Jack

Jack loves these pears.  Wash and peel your favorite variety.  Just make sure they're nice and ripe.  I'm extra cautious about scrubbing produce for Jack and Sam and use Veggie Wash to be on the safe side (thanks Robyn Scotto!).

Cinnamon Vanilla Pears

a bunch of ripe pears
a dash of cinnamon
a piece of vanilla bean, split


Add everything to a heavy pan.  Cook down over medium-low heat until they reach the consistency of applesauce, stirring every now and then.  Mash if they're too lumpy.  Cool and serve.  Freeze your leftovers.

*These become very watery when frozen/thawed.  I add a bit of cereal (rice,oatmeal) to thicken them back up.   
 

 

on today's playlist:  Don't Fly Away by Frances England

When It Rains...

We never did like this carpet.  Thanks KB.

Beating the Odds

We got home from Gainesville late last night.  We met with a great doctor at the UF Bone Marrow Transplant Unit who was able to break everything down in a very direct and understandable way.  Honestly, it wasn't what we were hoping to hear.  Sam has a rare form of lymphoma that is proving to be resistant to chemotherapy.  It is imperative that we find an effective type of chemo to get him into remission before we start the stem cell transplant process.  We discussed several treatment options, and he certainly didn't sugarcoat anything.  The odds aren't exactly in our favor.  We left Gainesville with heavy hearts, but very much trying to be strong for each other.  It felt so good to get home to Jack and lay out our new game plan.  Our first order of business was to throw those odds out the window.  No sense in worrying about statistics (my motto in grad school!).  There's just too much to live for.  Like this guy.

Cupcakes

We had a great time today at the Jeane Graves Charity Cupcake Challenge.  And no, I didn't enter.  It was a tough decision, but ultimately I feared committing to bake 5 dozen cupcakes may just induce the mental breakdown I'm long overdue for.  And with another round of chemo on Monday and our trip up to Shands on Wednesday, it's just not the week for that.  We had a fun time tasting though, and Jack got to see one of his very favorite people.