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!