Movin' On Up!

Sam was released from the hospital on Saturday, and he's feeling very fatigued. Though, considering he was given enough chemo to put a small woman into a coma, overall he's doing exceptionally well. I was glad I was able to stay with him in the hospital, but we were surprised to learn that Sloan-Kettering has semi-private rooms and only 2 sleeping chairs available for guests on each floor. It was an OK stay,and probably would have been a little more restful if his roommate didn't snore so loud and insist on sleeping with all of the lights on.

But on to the good part. During Sam's hospital stay, I came across an ad for a 3bed/3bath apartment on the Upper East Side, a few blocks from Memorial Sloan-Kettering. It was wildly out of our price range, but I thought I might just send them an offer of what we could afford along with a message explaining our situation. Praise the Lord, it just so happens the apartment owners are some of the most compassionate, generous people on earth. They not only offered up clothes, toys, food, and rides to Sam's appointments, but they're letting us stay in the apartment for a fraction of what we offered! Nuts, right? We're still in shock. Oh, and did I mention one of those bedrooms is a nursery? I can't convey how much of a relief it is to have both my son and husband in such a perfect place, in such close proximity to the hospital. I feel like I can finally breathe again. We obviously still have a long road in front of us, but I can't think of a better place to stop and rest. Andy and Alison Brettschneider, from the very bottom of my heart, thank you.

And thank you, too, to our NYC friends who have generously offered clothes, meals and play dates for Jack (a good thing because he's already bored with our company!). You all are amazing and we look forward to seeing everyone soon.

Oh, and our new address is 205 East 76th Street Apt.4 NY, NY 10021. We'll be here at least until 12/20. Maybe longer.

Thankful

We'd like to wish all of our loved ones a very Happy Thanksgiving.  We are most thankful for our wonderful family and friends.  We heard the The Heritage Center was overrun with supporters at the Sam Tripson Benefit.  Thank you so much to everyone who helped make the event such an amazing success.  We are deeply moved by such generosity and kindness, especially now with many families operating on a tight holiday budget.  Please know that we are appreciative of every dollar that was donated and plan to use these funds with the utmost thought and care.

Sam was finally admitted into the hospital yesterday.  He was feeling so awful that we tried to get him in sooner, but there were no available beds.  This past week has been nuts so please don't be offended or alarmed if you haven't heard from us.  In a strange sequence of events we ended up sleeping in 6 different places in 7 days.  Many of you have asked for our mailing address up here, and hopefully I'll have a response for you by Saturday.  So far, Sam is doing well, and may be released as early as tomorrow evening.  We plan on staying in the city, as close to the hospital as possible, in case anything goes wrong during his recovery period in between treatments.

Jack is doing great.  He's, unfortunately, not allowed on the floor to visit Sam, but he's been enjoying the sights and sounds of the Upper East Side on his daily walks with grandma.  I'll try to post pictures soon.  We hope everyone is having a fantastic day.  Have some pie for us!

   

Here we go

We scheduled an early appointment with Dr. Matasar this morning to discuss our game plan before our flight home. The doctor was very concerned by the results of the pet scan, and squeezed Sam in for another lymph node biopsy this afternoon since the last one was inconclusive. It doesn't look like we'll be coming home any time soon, and if all goes as planned we'll be spending Thanksgiving in the hospital. This has been an exhausting trip for Sam, much different from our last trip to the city. He hasn't been able to walk around at all, and I have to force him to eat. They were hesitant to even do the biopsy since he's running a fever of 103.8, but thought postponing it would be worse. He's in very good spirits though and continues to charm his way through the nursing staff. These nurses up here get quite a kick out of his size and accent. I'm sitting right outside his door as I type this and can hear he's got them giggling. Lord only knows what he's saying since he's slightly sedated. He most definitely is his father's son.

We are absolutely heart sick that we'll be missing not only the benefit, but Jack and Carrie's wedding as well. Sam wanted me to let everyone know that he sends his love and can't wait to catch up with everyone when he's better. And a big thanks to Amanda Nettboy for letting us stay in her super sweet East Village apartment. It's so comforting to be surrounded by books, gator stuff and baking supplies. just like home. only much more organized. Thank you! you saved us a bundle.

Sunday Update

The results of Sam's lymph node biopsy came back "inconclusive".  We are still waiting for word on the bone marrow biopsy.  Dr. Matasar requested Sam return for a PET scan so we'll be leaving next week for NYC, but we'll be back in town by Friday and plan on being at the benefit.  We can't proceed with the next treatment until we're 100% certain we know what we're dealing with.  It's extremely frustrating because all of Sam's lymphoma symptoms have returned.


Just a recap, Sam was re-diagnosed with T-cell rich B-cell lymphoma (TCRBCL) in mid-August.  It's a rare variant of the more common diffuse large B-cell lymphoma (DLBCL).  Sam's recovery will be a two step process.  First, finding a chemo that works and second, getting through the allogeneic stem cell transplant.  While the next round of chemo will involve a 4-6 week stay in NYC, the transplant will be even more intense, requiring a 3-4 month stay.  Because it is such a risky procedure, we obviously want him at the best possible transplant facility.  We're looking at M.D. Anderson in Houston, the Dana-Farber Cancer Institute in Boston, Memorial Sloan-Kettering in NYC, and Moffitt Cancer Center in Tampa.

This is all so mind-boggling and, honestly, quite overwhelming.  It's taken me all week to try to put some coherent sentences together to create this post.  Please bear with me if I'm slow getting back to your emails/messages/calls/texts.  I appreciate all of your words and am looking forward to seeing everyone soon! 

Here are a few pictures from the baby costume parade for those of you who aren't on facebook.  We dressed Jack up as baby Elvis.

Monday Update

Sam had a lymph node and bone marrow biopsy done on Friday.  It will be at least a week before we hear anything.  He hasn't been feeling well since the procedure so we're going to try to see Dr. Weeks (Sam's new oncologist) today.  We are still searching for housing for our big trip up north.  Thank you so much to all of our friends and family who have been on the lookout, especially Christy and Brent Johnston.  You two could seriously start a business helping people relocate to NYC.

Here are a few snap shots from breakfast this morning.  Berry-cherry oatmeal and banana puffs. 

Pumpkin Risotto for Jack

Delicious and perfect for fall.  It also doubles as a simple little side dish for mom and dad when doctored up with a bit of butter and parmesan cheese.  Not the most luscious, mind-blowing risotto you'll ever have, but not bad with roasted chicken on a weeknight. 

Creamy Pumpkin Risotto for babies

1/2 cup Arborio rice
1 1/2 cups veggie stock (if you're using store bought be sure it's low sodium or dilute with water)
1/2 cup pumpkin or butternut squash puree
tiny pinch of grated nutmeg

In a saucepan over medium-high heat, combine the rice and stock and bring to a boil.  Reduce heat to low, cover and simmer gently, stirring occasionally, until the liquid is absorbed and the rice is soft and creamy, about 20 minutes.  Remove from heat and let stand, covered, for 10 minutes.

Stir the puree and nutmeg into the rice.  Depending on your baby's age, transfer to a food processor and blend to desired consistency.  Add some water if needed.  Serve lukewarm or at room temperature.  Store any leftovers appropriately.

recipe source:  the Baby & Toddler cookbook, slightly modified
on today's soundtrack: All Creatures of Our God and King, Patty Griffin