Saturday, January 19, 2013

January hospital visit, or should I say rendezvous

We had Carter's first visit to the French hospital.  It started out horrible and ended ok.  We got there at 10am and they seemed a bit confused as to what to do with us.  His name was on the schedule but the doctor I'd been emailing wasn't in the hospital yet.  A few of them spoke a little bit of English, not really enough to fully communicate, and I know about 10 words in French so I was of no help.  Luckily, I brought along a wonderful new friend who did some translating for me.  We were finally assigned to a small room with two beds.  The nurse sent me downstairs to get registered (my awesome friend did that for me while I waited with my other two kids in the play room), and when I got back to Carter they had already accessed his port and taken his blood.  I was a little bothered that they did it all while I was gone but he was fine with it so I tried to tell my inner control freak to chill out.  They brought in some numbing cream to put on his back for his lumbar puncture.  I've never put it on him since he's always sedated for his LP so I asked them if they ever do sedations for them.  They do not, they just give the kids laughing gas or something like it, topical anesthesia, and hold the child still while they do it.  I was really nervous for it.  I told Carter what they were going to do and he told me he just wanted to be asleep for it.  Not long after we got settled, another kid was assigned to the same room in the other bed.  It was so awkward.  I know it used to be very common to share hospital rooms and apparently it still is in some places but this was my first experience with it.  It only made it worse that we don't speak french so the room was filled with a very uncomfortable silence.  After the other kid had his blood drawn, they saw that he was neutropenic (very low anc) and therefore had to have his own room.  We were moved to another room.  The doctor I'd been in contact with arrived at the hospital and came in to meet us.  She was so nice and sweet and spoke very good English.  I started to feel a little better after meeting her.  Then we waited.  And waited.  And kept waiting.  And then waited some more.  4 1/2 hours after our arrival they finally came in with some chemo.  It was so frustrating waiting so long.  Especially because no one told me what was going on.  And I couldn't just go ask a nurse because most of them wouldn't understand me.  It was really crappy.  But they finally came in to do the LP.  Carter, not surprising, did awesome.  He said he really liked the gas.  He was pretty silly.  It was fast and easy and I was so impressed with Carter.  Right after they finished, they had me help him lay down on his back and then said, "ok, now he needs to lay flat for two hours."  What?!?!  Are you kidding me?  We've already been here for 5 hours, we're exhausted, starving, and grumpy.  Not to mention my sweet friend who was not planning to be at the hospital with me ALL day.  I could not believe it.  But we turned on the tv to some french cartoons, pulled out the iPad, and a very kind nurse brought us a tray of snacks.  They came in with his other chemo which just takes a few minutes and then deaccessed his port.  We even had a visit from a clown.  She made balloon swords for the boys and blew bubbles for them to fight.  This is especially funny because my second born tells people he wants to be a clown when he grows up because he likes to make people laugh.  She was very nice and funny.  Just before the two hour mark I went and found the doctor and asked if we could go.  She looked a little surprised to see me, like she'd forgotten we were there, but told us that we could go.  We got outta there asap and got on the super crowded bus to go home.  What a long day!  Hopefully next time will be much better.  There will be no LP and they'll have all the paperwork and everything already.  It *should* be short and sweet.  I'm glad our first visit is out of the way.  I can't get the pictures to upload right now but I'll try again tomorrow.  There's a good one of the bubble-balloon sword fight.

Monday, January 14, 2013

We're foreigners now

We had Carter's last clinic visit at our original hospital just befor Christmas.  I took pictures of the hospital and of Carter with his doctor and nurses but they were lost last week when I left my phone on the bus :(. His counts were good, anc was higher than they like to keep it at this stage but with all the traveling we were about to do he left his doses the same just to be safe.  It was very hard to say good bye to everyone.  I cried the whole way to and from the hospital that day.  I tried to keep it together while inside the building, but didn't entirely succeed.  I had written some thank you notes and handed them out despite feeling that they were grossly insufficient.  How do you say thank you to the people responsible for saving your son's life?!  It was very emotional for me to leave that place for the last time, more so even than I thought it would be.  But leave we did.

We past the 2 year mark since diagnosis at the end of December.  We spent the day in Paris.  It sounds awesome and glamorous but it was far from both.  We were actually stranded in the airport all day long.  Literally.  We arrived at 9am, tried unsuccessfully to buy train tickets all day (our bank card wasn't working, we still don't know why), on the phone with our bank, sitting on the airport floor, trying to keep track of the kids and watch our ridiculous pile of luggage.  Completely exhausted, lots of frustration, and very little patience.  That was our day.  We finally gave up and forked out lots of money to stay at the Sheraton hotel inside the airport.  We caught a train the next morning and things have gotten better since then :). It feels good to have a full two years between us and that awful night of diagnosis.  That night I could not even come close to imagining what life would be like two years later.  And I NEVER would've imagined that we'd be living in a foreign country while Carter was still going through treatment.  It seems insane when I think about it but we know this is where we're supposed to be.  We are overjoyed with how well he has been doing and look forward to a lifetime of health and happiness for him.

Tomorrow morning is our first appointment at the French hospital.  To say I'm nervous is a laughable understatement.  I've mapped out the bus route several times, just to be safe.  I have my huge binder of cancer info and all of his past cbc's.  I've written down the name of his new doctor and her department in French in case I get lost and can't find anyone who speaks English.  I've recruited a French-speaking friend to come along with me.  I think I'm prepared... But I'm totally freaking out!  Ugh, I just want it to be tomorrow afternoon already so it's over.  Wish us luck, I'll let you all know how it goes.