August 9, 2013

Planes, BART, light rail, buses, shuttles, taxi

Our trip to San Francisco mostly consisted of getting from one place to another.  I think we took all possible forms of land transportation.   Our flight out of Las Vegas (we connected there), was delayed about seven hours, so we hopped on the plane to Oakland instead and took BART into San Francisco.  One of the Southwest employees told me that this was the way to go since SFO is notorious for delays due to low clouds.  Unfortunately our checked bags were still on the delayed flight and we didn't get them until midnight that night (for a fee!  We "voluntarily separated" from our luggage even though the flight was delayed for a ridiculous amount of time).  Because of getting into San Francisco later than planned we weren't able to stay in the Family House for that night, which is housing for families of seriously ill kids being seen at UCSF Children's Hospital.  Our San Francisco social worker was able to quickly find us other accommodations, and luckily for us they were across the street from the beach.  Even though it was rather cold Madeleine had a great time walking on the beach the next morning.

The consult with Dr. Matthay went very well.  Madeleine will be in one of two trials.  Both use the same level of MIBG (radioactive isotope that goes directly to the tumor, this is the radiation component of her treatment), and either a dose of chemo to go with it, or a different drug.  We are waiting to see if there is a spot open in one of the trials, but she will definitely be getting one of these combinations.  After signing consents and going over side-effects we toured the room where the therapy will be happening.  It looks like a regular hospital room, but the walls and floor have lead buried in them.  There is also a large lead "wall" shield that is placed between the bed and the door.  The door remains open all the time, and caregivers are in the safe zone as long as they are on the right side of the lead shield.  There is a small ante room with one of those lovely chairs that turns into a bed for a parent to sleep on.  If you've never had the pleasure of sleeping on such a  contraption consider yourself lucky.  We will be able to talk to Madeleine, and somewhat see her because of a mirror on the other side of the room.  For the first day or two we will only be able to spend about 20 minutes total on her side of the shield.  Most of this time will be devoted to helping her change clothes, or administer medicine, and other elements of self-care.  The nurses can't be in the room for any longer than we can.  Madeleine will be pretty much confined to her bed during this time because she will have a Foley catheter placed to remove urine from her body.  The catheter drains into a continuously flushing toilet. The radiation is emitted through the urine so it's important to get it out of her bladder as quickly as possible.  As the days pass the level of radiation will lessen and we will be able to be in the room with her for longer amounts of time.  They estimate that she will be inpatient for 5-7 days.

I realize I'm using the words radiation and radioactivity somewhat interchangeably.  Are they the same thing? I really don't know.

After the consult we went to Pier 39 and thoroughly enjoyed ourselves on the wharf.  I think the sea lions were Madeleine's favorite attraction.

Today, Friday, the day after we flew home, Madeleine checked in for chemo cycle #4.  I'm a little nervous about this round because it uses different drugs and we don't know how she will react to them.  Ryan took her in today, and we will trade off on Sunday so that he can go back to work.


Danelle said...

All o you are constantly in our thoughts!!! Please give Madi a huge hug from all of us!!

April said...

I hope things are going okay with this round of chemo. Keeping you all in our thoughts and prayers.

Adelaide and Harleigh Morris said...

Prayers and good juju for this round of Chemo, that it is at least as effective as the last rounds (or more so!) and that she tolerates it as well or better. I am so glad she's able to participate in these therapies in SF, but am thinking of you all for the isolation of this process, and for her. She's so incredibly strong, and this will hopefully make her so much better! If there's anything she wants to take in with her, or anything we can do, please tell us and we'll be all over it!

Paul Smith said...

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