USC/Friedman -- questions about logistics of trip from East Coast/DC

[JaneMD]

Hi!  My husband was diagnosed 9 years ago with a 2 mm tumor, which has progressed over time to a 14 mm size.  As it's nearing the brain stem, we think it's go time.  We have evaluated surgeons in NYC, at Hopkins, and at House, and have chosen Dr. Friedman at USC.  We are traveling for his surgery at a date TBA. 

We are in touch with Kris, his patient coordinator, and we are thrilled to have her as a resource.  While we nail down dates/insurance, I am looking ahead to the logistics of our trip, and I'm hoping someone out there has a similar experience from which we can draw. 

The list of hotels that USC provided was very helpful, and we're confident we can find something local for the first 4-5 days.  Can anyone share where they stayed and thoughts on convenience/safety/etc.?  In this board's experience, do most people go elsewhere for the next 4 days or so?  Will my H have to go back and forth to USC on the days he's released, or will he just have one follow up appointment on the 8th day or so?  If we leave to go somewhere else, does it have to accommodate any balance issues?

Pasadena looks quite reasonable for the days in the area post-surgery, but we are also trying to figure out if going to the beach would be ridiculous, given the traffic/distance, or if it will be restful. We were wondering if there is anyone from the East Coast who might have recently gone through the same travel itinerary who might be willing to share their experience with us.

Last, while this is obviously a family decision, we were wondering if anyone had any thoughts about people who travel with children.  We have an only child who is 7 years old and flipped out about our going away without her for 10 days.  We can either work on that issue between now and H's surgery date, or have a grandparent bring her for the last 5 days.  Does anyone have any experience with whether or not patients find that difficult to manage, or if it's all fine?

Any insights you have are much appreciated.  Thanks for all your help! 

[arizonajack]

Take the 7 year old and leave enough time before the surgery date to go to Disneyland.

 

[ANnIdaho]

Hi JaneMD,

I am scheduled for surgery Sept 22nd at USC and had spoken with another forum member who is there this week.  She mentioned how she had rented a vrbo house near pasadena that had a pool (for her husband and 7 1/2 yr old son).  I looked into it and decided to rent the same house when I go.  My husband and I plan to stay first in a hotel nearby USC for the first night we are there and then for the night of the pre-op appts.  Cost was approx 159 (with the discount) then we are going to rent the house for the next 7 days or so for 179, if you factor in all the meals etc it is not a bad deal and I feel that a quiet place like that would be better for my recovery between discharge from hospital and follow-up appt than noisy downtown LA.  You do not have to travel back and forth after your husband is discharged from the hospital unless there are any complications.  The forum member who I spoke with said they tried the beach but the traffic was so horrific they won't be going back.  They did say a popular place is the La Brea (sp?) tar pits. My children are older (17 and 15) and I will leaving them at home only cuz they'd be bored and they are in school and their older sister (24) is nearby to check in on them.  10 days away from mom and dad can be hard on a 7 yr old. Perhaps plan to get there a few days ahead so you husband can join in on maybe a trip to disneyland or someplace else but realize he probably will not be up to much after that....at least from all the patient stories I've read that is..

BTW I'll be traveling from Boise...not quite the east coast.  But I'm sure if you ask Kris, the patient navigator she can get you in touch with former patients that might be from your neck of the woods.

Best of luck to you and your husband on his AN journey.   Feel free to message me if you have any questions.

Bonnie

[JaneMD]

Bonnie --

It was so kind if you to share your info. I can't tell you how much I appreciate knowing how other folks are handling the travel.

I wasn't necessarily thinking that we would want to take a day trip to the beach  -- I was more trying to evaluate whether staying in Pasadena is better than braving the traffic to recover at the beach. I want it to be restful and helpful to his recovery, and not complicated. And your info about the house is so interesting!  I'll message you for more details, and keep you in my thoughts on the 22d.

[JaneMD]

I noticed that there are a lot of views to this topic, so as we formulate our plan, I thought it might be helpful to other people contemplating the same trip to know how it's playing out, for us, so far. 

Initial contact with Dr. Friedman's office:  After we decided on USC, we reached out to Dr. Friedman's office, and heard back from Kris within 24 hours.  Kris called us and talked us through the process, and sent us a patient info packet by email the next day.  After our initial call, we have mostly communicated with Kris by email,  which has worked so well for us, and for which we are so grateful.  She's available by phone and text, too.  Dr. Friedman's office has a huge amount of information that they send out, and all the options for housing are laid out pretty well.  Kris, the patient coordinator, also has a general timeline that is super useful in getting plans in place. 

Scheduling:   After insurance was potentially and relatively straightened out, Kris asked us to propose some potential surgery weeks that worked for our schedule.  We compared school calendars and work projects and after nailing down some times that worked for us, we emailed the dates to Kris, who responded within a day.  Our proposed dates were within a few days of when Dr. F is available.  We are still deciding between two dates, but in the meantime, we have started looking at accommodations. 

Accommodations:  It looks like we are going to stay in a hotel for days 0 - 4, and then move to Pasadena for days 5 - 9, although we may stay in Pasadena the entire time.   We plan to fly out our 7 year old with a grandparent on day 5, to join us for recovery.  Although the beach would be lovely, we are looking at surgery in Nov or Dec, and we decided it wasn't worth the length of the trip to the beach at that time of year.  If everything goes well, we will only have to come back to the hospital once for follow up, but in case there's a hiccup, we wanted to be closer than the beach.  Pasadena seemed to be a good compromise.  I'm planning on comparing rates for hotels/VRBOs next, in case anyone would find that info useful. 

I hope this is helpful to anyone trying to understand how travel to the West coast from the East coast might work.  I'll update as we straighten out more details.   

[michellef08]

Hi Jane,
I traveled from DC to House in LA 2.5 years ago for my surgery! Have you attended a DC area local support group? There is one on Saturday, September 12, from 10:00 AM to Noon in the Boardroom at The Lab School of Washington, 4759 Reservoir Road, NW, Washington DC 20007. You should attend, I will be there!

I went out to LA early to go to Disney, and drive down to San Diego to see friends so it was a fun trip! My surgery was on Wednesday  morning, and they would have released me from the hospital on Saturday, but our hotel reservation didn't start until Monday so I stayed any extra night. Luckily at House, they have an on-site "hotel" which is where my family stayed during that time. Then on Monday we (my parents, sister, and fiance at the time, now husband) drove down to Newport Beach to stay in the Marriott Villas. The hour drive from LA to Newport Beach wasn't bad at all! I was awake and able to sightsee out the window the entire time. I actually was just back there this weekend and was reminiscing about that drive down. It was also really nice to stay at the beach in such a pretty place! I was able to venture out on Day 7 post-op and walk down a steep dirt hill to enjoy the beach for a little bit.

Your husband will have to go back a week post-op for a checkup and to get the stitches and staples out. We drove from Newport to LA on Day 8 post-op, then drove back down to Newport. I flew home on day 10 post-op, with no issues whatsoever.

Let me know if you have any other questions, I am happy to share my experience!
~Michelle

[JaneMD]

Thanks so much, Michelle.  It was wonderful to see that someone had a good experience with Dr. F, and experienced no serious side effects.  And yes:  I'll see you at the DC meeting!