So You Think You Can Donate?

Many of you have been asking how you can get tested to see if you're a match for Sam's transplant.  First off, thank you so much.  That's an incredible offer, and it would be a dream come true to discover one of our friends happens to be a perfect match!  We are deeply touched by your generosity.  Hopefully you'll find this information to be helpful.

Getting Tested

A perfect match for a stem cell transplant happens when a certain group of 5 genes (or 10 alleles) responsible for 'self-recognition' contain identical markers.  Testing requires a simple mouth swab.  There are two options for potential donors who want to help Sam.  You can get tested through the Nation Bone Marrow Registry, which is constantly being updated as Memorial Sloan-Kettering searches for his donor, or you could use a private service called Kashi Clinical Laboratories that will send you a kit and give its preliminary results to Sam's doctor directly.

In the first case, you would be joining a national donor bank and would be indicating a strong commitment to becoming a stem cell donor not only for Sam but for anyone else in need in the future.  In the second case, you would be tested to be a potential match for Sam and would not be joining a national registry.

Becoming a Donor

Sam will likely be receiving a peripheral blood stem cell transplant.  It involves the donor getting daily injections over five days of a drug that stimulates the release of stem cells into the bloodstream.  These blood-forming cells are extracted from the donor's blood in a process similar to a regular (though longer) platelet donation.  The side effects may include mild muscle aches from the injections which disappear shortly after the donation is complete.  If you're pregnant or breastfeeding you are not a candidate, though we certainly appreciate the offers!

Timeframe

If you make the decision to get tested, in order to be useful to Sam, the sooner you get started, the better.  It will take some time to get tested and analyze the results so we encourage fast action.  Below is some information on how to get tested.  Feel free to call or email with questions and please forward this on to any friends or family who may be interested.  

1) Kashi Laboratories

www.bonemarrowtest.com

This is a private process.  You can request a test kit for $175.  When filling out the form you must note Sam's name (Sam Tripson) and his doctor's name and contact info.  

Dr. Matthew Matasar

1275 York Avenue

New York, NY 10065

Tel: 212-639-8889

Fax: 646-422-2291

2) The National Bone Marrow Registry

www.marrow.org/HELP/Join_the_Donor_Registry/Join_Now/join_now.html

You can join the registry online for $52 by ordering a simple kit.  If you go this route and want to know if you are a match for Sam, please request your donor ID number and give it to us.  We can contact the people conducting the search at Sloan-Kettering and make sure the donor registry has been searched since your entry was added.

If you're in NYC or DC you can go to a National Marrow Donor Program office and be tested.  It costs $65.

NYC:

33 East 33rd Street

Suite 501

New York, NY 10016

212-209-6700

DC:

400 Seventh Street, Northwest

Suite 206

202-6380738

Again, thank you so much for all of the love and support.  How amazing it would be to know our donor!!  And, of course, this would qualify you for a lifetime of free baked goods!

Happiest!

We wish all of our friends and family the happiest of holidays!  We're spending our holiday in Andy and Alison's apartment (no worries, we're still regularly picking up our mail at the other address).  I'm not sure how I'm ever going to get Sam and Jack to leave between the movie theater and fully stocked, luxury playroom!  It's a special treat for all of us.  Thank you so much to the Brettschneiders and all of our wonderful friends and family for everything you've done for us. 

Sam is feeling great!  We heard back from the lab and, unfortunately, neither Rob nor Charlotte are a match for the stem cell transplant.  They have found partial matches, but we really need a full match.  Please continue to pray not only for us, but for Sam's donor as well.  What an amazing gift they will be giving us!

Hope you all are having a wonderful holiday! And we actually did have a few gifts to open this morning.  A special thank you to our thoughtful friends who sent gifts for Jack, and Debby and Stacey for delivering a fabulous tree! 

   

Last Round of Chemo

Sam is almost finished with his last round of chemo and feeling great!  It took a while to get him admitted, but since then it's been smooth sailing.  Having a private room has made a huge difference.  Thank you to everyone who played a part in making that happen.  And, again, thank you so much to all of our supporters.  A private room does not come cheap around here, and having that extra help has been amazing!  Sam is set to be released tomorrow, and we have an appointment with a transplant doctor on Tuesday.  We'll let you know how it goes.  We're still waiting to hear if Rob or Charlotte are good matches, but the preliminary search from the donor bank showed very promising results if we need to take that route.

Baby It's Cold Outside

Hello everyone!  Just wanted to check in and let you know we're all doing well.  Sam is having a great week and is feeling good.  We try to get out for walks every day, and he has officially lost all of his hair.  The weather has turned chilly, but we're more than prepared with tons of winter clothes thanks to all of our new city friends!  

Thank you for all of the wonderful mail we've been receiving.  If you missed our address, here it is again 205 East 76th Street Apt. 4 NY, NY 10021.  We LOVE hearing from you!  It seriously brightens our whole day.  Hope you are all well, and not stressing out too much during this holiday season.  When it comes right down to it a well decorated house, perfectly planned menu and small mountain of gifts are all pretty trivial.  In fact, we're not even doing gifts this year.  It honestly just seems a little silly to us.  We're grateful we get to be together in this beautiful city, and we can't think of a better way for Jack to spend his first holiday.   

Home!

Hospital Life

Sam's doing better today, and there's talk of him being released tomorrow.  His appetite is back and his platelet and hemoglobin counts are up.  Fingers crossed for no more nose bleeds or fevers!  Our thoughts are with the Soud and Morton families back in Florida tonight.  Lori was in a terrible car accident and is in the ICU at Shands.  Many, many prayers for healing and strength! 

Sam's in the hospital

Sam's blood counts were low and he was sick and running a fever Wednesday night so he's been readmitted to the hospital.  He's been given platelets, antibiotics, blood and lots of hydration, and hopefully he'll be released within the next few days.  Thank you Alison and Kelly for bringing us a huge care package to make our hospital stay a bit more comfortable.  And a big thanks to everyone for all of the food, clothes and toys that have been sent over to the apartment.  You all have certainly helped to make us feel at home in this big city.  

Jack is doing fantastic.  He had his first NYC play date and made another new friend in Central Park yesterday.  And the owners of NY Kids Club and Little Maestros have graciously invited him to attend their baby classes free of charge!  Safe to say, Jack's having a ball up here, and his social calendar is filling up fast.

We miss everyone and were delighted to get some mail from back home.  Thank you so much for thinking of us, and please keep those letters coming!

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   

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.